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Category: MS

Nitrous Oxide (NO) Balloons & Multiple Sclerosis

Nitrous Oxide Balloons and Canisters.
Image Credit: Compass -uk.org

Nitrous Oxide (NO) Balloons & Multiple Sclerosis – 30 seconds being high to a lifetime of MS.

Laughing Gas (Nitrous Oxide) or Balloons

Laughing gas is being banned in the UK (nitrous oxide otherwise known as balloons, hippy crack, or nos to young people).

The risks of being high for 30 seconds and living a life with MS.

Michael Gove has this morning announced plans for the government to ban Nitrous oxide.

In the United Kingdom, nitrous oxide is the second most prevalent drug among young adults aged 16 to 24 years, after cannabis, according to the European Union drugs monitoring agency EMCDDA. 

About Michael Gove: Michael Gove – Wikipedia

Michael Gove Contact Details: Contact information for Michael Gove – MPs and Lords – UK Parliament

About Sophy Ridge: Sophy Ridge – Wikipedia

Sophy Ridge Contact Details: Sophy Ridge on Sunday & The Take (@RidgeOnSunday) / Twitter

Sophy Ridge asked: ‘Are you really going to give people a criminal record for a 30-second high from laughing gas?’

When asked if the plans were hypocritical given the fact that some MPs have been known to take drugs including himself, he said ‘No…because I’ve learned’.

Nitrous oxide set to be banned in crackdown on laughing gas (msn.com)

Editors Thoughts:

Nitrous Oxide is being used in many industries from catering to hospitals, and dentistry, whilst banning will only heighten the black market it would be better to enlighten people especially in schools and on social media the devasting effects of using nitrous oxide for recreational purposes. Hospitals are already restricting gas and air pain relief in maternity wards.

Why has this bill taken so long to come to light? The powers that be should educate young people with media amplification about the dangers of using recreational drugs and the consequences. Obviously, there will be people that will take risks and worry about the aftermath later.

If more was done about teaching the masses the repercussions of taking drugs, more people will be inclined to think twice”.

If social media was flooded with dangers, more lives would be saved.

What is Nitrous Oxide

Nitrous oxide, also known as laughing gas, is a colorless and odorless gas with the chemical formula N2O. It is a non-flammable gas that is commonly used as a mild anesthetic in medicine and dentistry. Nitrous oxide is also used as a propellant in aerosol cans and whipped cream dispensers, as well as in the food industry for its preservative properties.

Nitrous oxide was first discovered in 1772 by the English chemist and natural philosopher Joseph Priestley. He observed that the gas had the ability to extinguish flames and wrote about its properties in his book, “Experiments and Observations on Different Kinds of Air.” It was not until the early 1800s that nitrous oxide began to be used for medical purposes.

Nitrous oxide works by suppressing the nervous system and reducing the sensation of pain. When inhaled, it enters the bloodstream and travels to the brain, where it acts on certain receptors to produce a sense of euphoria and relaxation. This is why it has been dubbed “laughing gas” – some people report feeling giddy or giggly after inhaling it.

In medicine, nitrous oxide is often used in combination with other anesthetics to produce a state of sedation for patients undergoing minor surgical procedures, such as dental work or endoscopy. It is also sometimes used during childbirth to help manage pain and reduce anxiety.

Outside of the medical setting, nitrous oxide is sometimes used recreationally as a “party drug.” In these situations, it is often inhaled from a balloon or canister and can produce feelings of euphoria, relaxation, and altered consciousness. However, it is important to note that nitrous oxide can be dangerous when used improperly, and can cause serious health problems or even death in high doses.

One of the potential dangers of nitrous oxide is oxygen deprivation. When inhaled in large quantities, nitrous oxide can displace oxygen in the bloodstream, which can lead to oxygen deprivation and cause damage to the brain and other organs. This is why it is important to only use nitrous oxide in a controlled medical or recreational setting, and to never inhale it directly from a canister or balloon.

In conclusion, nitrous oxide is a gas with a long history of use in medicine and industry. It has both therapeutic and recreational applications but can be dangerous when used improperly. If you are considering using nitrous oxide for any reason, it is important to do so under the guidance of a medical professional or in a controlled, safe setting.

What Is Nitrous Oxide Used For

Nitrous oxide is used for various purposes, both in medical and non-medical settings. Here are some of the most common uses of nitrous oxide:

  1. Anesthesia: Nitrous oxide is widely used as a mild anesthetic agent in dentistry and surgery. It is often used in combination with other anesthetics to produce sedation and pain relief for minor surgical procedures.
  2. Pain management during labor: Nitrous oxide can be used to manage pain and reduce anxiety during labor and delivery.
  3. Whipped cream dispensers: Nitrous oxide is used as a propellant in whipped cream dispensers, where it helps to create a creamy, fluffy texture.
  4. Aerosol cans: Nitrous oxide is used as a propellant in some aerosol cans, such as cooking sprays and hair sprays.
  5. Food preservation: Nitrous oxide is used in the food industry as a preservative, as it can inhibit the growth of bacteria and other microorganisms.
  6. Automotive industry: Nitrous oxide is used as a performance-enhancing substance in the automotive industry, where it is often used to boost the power output of high-performance engines.
  7. Recreational use: Nitrous oxide can be used recreationally to produce a sense of euphoria and altered consciousness. However, this use is illegal in many countries and can be dangerous when used improperly.

Nitrous oxide has a wide range of applications, from medical and industrial.

Can the use of nitrous oxide can multiple sclerosis

Nitrous oxide, commonly known as laughing gas, is a colorless and odorless gas that has been used for its anesthetic properties in medical and dental procedures for over a century. While it is generally considered safe when used as directed, there is growing concern that the use of nitrous oxide may exacerbate or even trigger autoimmune disorders such as multiple sclerosis.

Multiple sclerosis (MS) is a chronic autoimmune disorder that affects the central nervous system, causing a range of symptoms such as numbness, tingling, weakness, and difficulty with balance and coordination. The exact cause of MS is not fully understood, but it is believed to involve a combination of genetic and environmental factors.

One potential environmental factor that has been implicated in the development and progression of MS is nitrous oxide. Nitrous oxide is known to inhibit the activity of an enzyme called methionine synthase, which is essential for the production of myelin, the protective coating that surrounds nerve fibers in the brain and spinal cord.

In individuals with MS, the immune system mistakenly attacks and damages the myelin, leading to the characteristic symptoms of the disease. By inhibiting methionine synthase, nitrous oxide may further disrupt myelin production and exacerbate the underlying autoimmune process.

Several studies have suggested a link between nitrous oxide use and the development or progression of MS. One study published in the journal Anesthesiology found that patients with MS who received nitrous oxide during surgery were more likely to experience a relapse of their symptoms within six months compared to those who did not receive nitrous oxide.

Another study published in the journal Neurology found that exposure to nitrous oxide was associated with an increased risk of developing MS among individuals with a genetic predisposition to the disease. The authors of the study concluded that nitrous oxide may act as a trigger for the autoimmune process in susceptible individuals.

Nitrous oxide, commonly known as laughing gas, is a colorless, odorless gas with several medical uses. It is used as an anesthetic agent during dental procedures, as an analgesic agent during labor, and as a recreational drug due to its euphoric effects. However, there is some concern about the use of nitrous oxide in individuals with multiple sclerosis (MS) and other autoimmune disorders.

Multiple sclerosis is a chronic autoimmune disorder that affects the central nervous system (CNS). It is characterized by inflammation and damage to the myelin sheath, which is a protective covering around nerve fibers. The symptoms of MS vary depending on the location and extent of the damage to the CNS. Common symptoms include muscle weakness, fatigue, difficulty with coordination and balance, and vision problems.

There is some evidence to suggest that the use of nitrous oxide may exacerbate the symptoms of MS. Nitrous oxide can increase the levels of homocysteine in the body, which is a non-protein amino acid that has been linked to increased inflammation and damage to the CNS. Studies have shown that individuals with MS have higher levels of homocysteine than individuals without MS and that elevated homocysteine levels may be a risk factor for disease progression.

In addition to MS, there is also concern about the use of nitrous oxide in individuals with other autoimmune disorders, such as rheumatoid arthritis and lupus. These disorders are characterized by inflammation throughout the body, and nitrous oxide may exacerbate this inflammation.

Despite these concerns, the use of nitrous oxide in individuals with MS and other autoimmune disorders is still considered safe in most cases under medical supervision such as anesthesia. However, it is important for individuals with these conditions to discuss the use of nitrous oxide with their healthcare provider before undergoing any procedures that require its use.

In some cases, alternative anesthesia options may be considered for individuals with MS and other autoimmune disorders. For example, regional anesthesia, such as an epidural or spinal block, may be used instead of general anesthesia. These types of anesthesia do not involve the use of nitrous oxide and may be a safer option for individuals with autoimmune disorders.

Conclusion:

While the use of nitrous oxide is generally considered safe for industries that use it, there is some concern about its use in individuals with MS and other autoimmune disorders. Therefore the risks of using nitrous oxide for recreational purposes should be avoided at all costs.

It is important for individuals with autoimmune conditions to discuss the use of nitrous oxide with their healthcare provider before undergoing any procedures that require its use. Alternative anesthesia options may be considered in some cases to minimize the potential risks associated with nitrous oxide.

With the dangers of nitrous oxide causing multiple sclerosis the powers that be should do more to promote the pitfalls through television and social media advertising.

Nitric oxide modulation for autoimmune disease | Dr. K. News (drknews.com)

The role of nitric oxide in multiple sclerosis – The Lancet Neurology

Nitrous Oxide Side Effects: Long Term, Short Term, Overdose, and More (healthline.com)

Further Reading:

https://www.itv.com/news/2022-08-05/laughing-gas-patients-through-the-roof-amid-rise-of-powerful-larger-cylinders

https://www.bbc.co.uk/news/magazine-33691783

Nitrous Oxide | Facts about Nitrous Oxide::DAN 24/7 (dan247.org.uk)

https://www.compass-uk.org/news/compass-go-2/rise-in-reports-of-nitrous-oxide-canisters-on-the-streets/

https://theconversation.com/nitrous-oxide-neurologists-report-a-worrying-rise-in-young-people-with-paralysis-189722

https://www.telegraph.co.uk/health-fitness/body/nitrous-oxide-laughing-gas-not-just-harmless-fun/

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#nitrousoxide #laughinggas #balloons #canisters #ms #multiplesclerosis #recreationaldrugs #anesthesia #autoimmunedisease #autoimmunedisrorders

What Is Cell & Gene Therapy AI

What Is Cell & Gene Therapy AI?

Cell and gene therapy are revolutionary approaches to treating diseases at the molecular level. They involve the manipulation of living cells and genetic material to correct or replace damaged or diseased cells in the body. The potential of these therapies to cure or significantly improve many types of diseases, including cancer, genetic disorders, and autoimmune diseases, has been recognized by the medical community as a significant breakthrough.

In cell therapy, healthy living cells are introduced into the body to replace damaged or diseased cells. This therapy has shown great promise in the treatment of certain types of cancer, where immune cells are modified to recognize and attack cancer cells. Gene therapy, on the other hand, involves introducing healthy genes into cells to replace or repair damaged or diseased genes. This therapy has been used to treat genetic disorders such as sickle cell anemia and hemophilia.

While cell and gene therapy holds great potential, the development of these therapies is a complex and challenging process that requires extensive research and testing. One area where artificial intelligence (AI) can help is in the identification of potential targets for cell and gene therapy.

AI can analyze vast amounts of genetic data and identify patterns that might not be visible to human researchers. This information can then be used to identify potential targets for cell and gene therapy. For example, AI can identify the specific genes that cause disease or the cells that are most vulnerable to attack by the immune system.

Another way AI can help is by predicting the efficacy of a cell or gene therapy treatment. AI can analyze data from clinical trials to predict the outcomes of future trials. This information can then be used to improve the design of future trials and identify the patients who are most likely to benefit from the treatment.

AI can also help with the development of personalized cell and gene therapy. Personalized therapy involves tailoring the treatment to the individual patient’s genetic makeup. AI can analyze a patient’s genetic data and identify the specific genes that need to be targeted. This information can then be used to design a treatment that is personalized to the patient’s specific needs.

Cell and gene therapy holds great promise for the treatment of many types of diseases. However, the development of these therapies is a complex and challenging process that requires extensive research and testing. AI can play a crucial role in this process by identifying potential targets for therapy, predicting the efficacy of a treatment, and developing personalized therapy. As AI continues to improve, it is likely that it will become an even more valuable tool in the fight against the disease.

Who would benefit from cell and gene therapy?

Cell and gene therapy are innovative approaches to treating a wide range of diseases and conditions, which have the potential to provide significant benefits to patients. These therapies involve using genetically modified cells or genes to restore or enhance the normal functioning of the body’s cells or tissues, thus offering new opportunities for treating both rare and common diseases.

Cell therapy involves the transplantation of cells, typically stem cells or immune cells, to replace or regenerate damaged tissues. Gene therapy, on the other hand, involves the transfer of genes into cells to correct genetic defects or provide therapeutic effects. Both therapies can be used alone or in combination with each other or other treatments.

There are several diseases and conditions that could benefit from cell and gene therapy, including:

  1. Cancer: Cell therapy has shown significant promise in treating certain types of cancer, such as leukemia and lymphoma. The use of CAR-T cells, which are genetically modified immune cells that can target cancer cells, has led to remarkable responses in patients with advanced cancer.
  2. Genetic disorders: Gene therapy can potentially cure or treat genetic disorders caused by mutations in a single gene. For example, gene therapy has been used to treat inherited retinal diseases, such as Leber congenital amaurosis, which can cause blindness.
  3. Neurological disorders: Cell therapy has shown potential in treating neurological disorders, such as Parkinson’s disease, spinal cord injury, and multiple sclerosis. Stem cells can be used to regenerate damaged or lost cells in the brain or spinal cord, while gene therapy can target specific genes involved in these diseases.
  4. Cardiovascular diseases: Cell therapy has been used to repair damaged heart tissue in patients with heart failure or heart attacks. Stem cells can be used to regenerate new heart tissue or blood vessels, while gene therapy can target genes involved in heart function.
  5. Immunodeficiency disorders: Gene therapy has been used to treat severe combined immunodeficiency (SCID), also known as “bubble boy” disease, by correcting the genetic defect that causes the condition. Cell therapy can also be used to boost the immune system by transplanting immune cells.
  6. Autoimmune diseases: Cell therapy has shown potential in treating autoimmune diseases, such as rheumatoid arthritis and lupus. Immune cells can be modified to reduce inflammation or target the cells causing the disease.

In summary, cell and gene therapy offers exciting new opportunities for treating a wide range of diseases and conditions. While these therapies are still in the early stages of development, they hold great promise for improving the lives of patients and potentially even curing some diseases. People who suffer from the diseases and conditions mentioned above and other chronic diseases could benefit from cell and gene therapy, and it is important to continue to support and invest in this promising area of medicine.

Further Reading

https://cymrumarketing.com/category/cell-and-gene-therapy-ai-marketing/

CGTAI Domain Name For Sale (www.CGTAI.com) | UK DOMAIN BROKERS, WEBSITE DEVELOPMENT & MARKETING (ukwebsitedesigners.co.uk)

McKinsey insights on cell and gene therapy | Life Sciences | McKinsey & Company

50 leading cell and gene therapy companies | Drug Discovery (drugdiscoverytrends.com)

Top 10 Gene Therapy startups (medicalstartups.org)

Gene Therapy AI (www.genetherapyai.com) Domain For Sale. | UK DOMAIN BROKERS, WEBSITE DEVELOPMENT & MARKETING (ukwebsitedesigners.co.uk)

GP AI www.gpai.co.uk Domain Name For Sale | UK DOMAIN BROKERS, WEBSITE DEVELOPMENT & MARKETING (ukwebsitedesigners.co.uk)

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Multiple Sclerosis

Multiple Sclerosis

Multiple Sclerosis (MS) is a chronic autoimmune disease that affects the central nervous system (CNS). The CNS consists of the brain and spinal cord, which play a crucial role in transmitting signals throughout the body. MS damages the protective covering (myelin) of nerve fibers in the CNS, leading to a range of symptoms that can range from mild to severe.

MS is one of the most common neurological disorders, affecting an estimated 2.3 million people worldwide. It is more prevalent in women than men, and typically begins to develop in young adulthood, between the ages of 20 and 40.

The exact cause of MS is still not known, but researchers believe that a combination of genetic and environmental factors contribute to its development. Some of these factors include a person’s geographic location, viral infections, and low levels of vitamin D.

MS can present in several different forms, each with its own unique symptoms and progression. Some of the most common forms of MS include:

  • Relapsing-Remitting MS (RRMS): This is the most common form of MS and is characterized by periods of symptoms (relapses) followed by remissions.
  • Secondary Progressive MS (SPMS): This form of MS typically begins as RRMS and gradually becomes more progressive over time, with symptoms becoming more severe and frequent.
  • Primary Progressive MS (PPMS): This form of MS is characterized by a gradual progression of symptoms from the onset, with no remissions.

Common symptoms of MS include:

  • Muscle weakness or spasms
  • Loss of balance or coordination
  • Vision problems
  • Numbness or tingling in the limbs
  • Fatigue
  • Speech difficulties
  • Bladder problems

Diagnosis of MS can be challenging, as its symptoms are similar to those of other conditions. A neurologist will typically perform a physical exam, review the patient’s medical history, and order tests such as magnetic resonance imaging (MRI) and cerebrospinal fluid analysis to help determine if MS is the cause of the symptoms.

Currently, there is no cure for MS, but there are several treatments available to help manage its symptoms and slow its progression. Some of the most commonly used treatments include:

  • Disease-Modifying Therapies (DMTs): These medications can slow the progression of MS and reduce the frequency and severity of relapses.
  • Steroids: These medications can be used to treat acute relapses and reduce inflammation.
  • Physical and Occupational Therapy: These therapies can help improve muscle strength, coordination, and overall quality of life.
  • Supportive Therapies: This includes medications to help manage specific symptoms, such as fatigue, spasticity, and bladder problems.

Living with MS can be challenging, but it is important for people with MS to maintain a healthy lifestyle, including regular physical activity, a balanced diet, and adequate sleep. They should also keep a close relationship with their healthcare provider, who can help monitor their condition and recommend appropriate treatments.

In conclusion, MS is a chronic autoimmune disease that affects the central nervous system, leading to a range of symptoms. While there is no cure for MS, there are several treatments available to help manage its symptoms and slow its progression. With proper care and support, people with MS can continue to live fulfilling and active lives.

#ms #multiplesclerosis #msrelapses #muscleweakness #spasms #mshugs #visionimpairment #opticalnerve #numbness #fatigue #speechimpendiment #bladderproblems

Lesions

Lesions

Lesions are abnormal changes in the tissue or structure of an organ or body part. They can be caused by various factors including injury, disease, or infection. Lesions can range in size and severity, from small and benign to large and life-threatening. In this article, we will explore the different types of lesions, causes, and treatments.

Types of Lesions

There are several types of lesions, including:

  1. Macules: Flat, discolored patches of skin that are different in color or texture from than surrounding skin. Macules can be red, brown, or lighter than the surrounding skin.
  2. Papules: Raised, solid bumps on the skin that are usually less than 1 cm in diameter. Papules can be red, brown, or skin-colored.
  3. Nodules: Larger, solid bumps on the skin that are more than 1 cm in diameter. Nodules can be painful and can be red, brown, or skin-colored.
  4. Plaques: Raised, flat-topped patches on the skin that are larger than 2 cm in diameter. Plaques can be red, brown, or skin-colored.
  5. Vesicles: Small, fluid-filled blisters that are less than 1 cm in diameter. Vesicles can be red, and painful, and are often surrounded by red, inflamed skin.
  6. Bullae: Larger, fluid-filled blisters that are more than 1 cm in diameter. Bullae can be red, and painful, and are often surrounded by red, inflamed skin.

Causes of Lesions

Lesions can be caused by a variety of factors, including:

  1. Infections: Lesions can be caused by bacterial, viral, or fungal infections. Some examples include impetigo, chickenpox, and athlete’s foot.
  2. Physical injuries: Lesions can be caused by cuts, bruises, burns, or other physical injuries.
  3. Skin disorders: Lesions can be caused by skin disorders such as acne, eczema, psoriasis, and rosacea.
  4. Autoimmune diseases: Lesions can be caused by autoimmune diseases such as lupus and rheumatoid arthritis.
  5. Cancer: Lesions can be caused by skin cancer, including basal cell carcinoma, squamous cell carcinoma, and melanoma.

Treatment of Lesions

The treatment of lesions depends on the type, size, and cause of the lesion. Some common treatments include:

  1. Antibiotics: Lesions caused by bacterial infections can be treated with antibiotics.
  2. Topical creams: Lesions caused by skin disorders can be treated with topical creams, ointments, or gels.
  3. Surgical removal: Lesions that are large or that are caused by skin cancer can be removed surgically.
  4. Radiation therapy: Lesions that are caused by cancer can be treated with radiation therapy.
  5. Cryotherapy: Lesions can be treated with cryotherapy, which involves freezing the lesion with liquid nitrogen.

In conclusion, lesions are abnormal changes in the tissue or structure of an organ or body part. They can be caused by various factors including injury, disease, or infection, and can range in size and severity. Treatment of lesions depends on the type, size, and cause of the lesion and can include antibiotics, topical creams, surgical removal, radiation therapy, or cryotherapy. If you have a lesion that is causing concern, it is important to consult a healthcare provider for proper diagnosis and treatment.

#lesions #brainlesions #spinelesions #mslesions #multiplesclerosis #ms #multiplesclerosislesions

Anxiety: Understanding and Coping with a Common Emotional Disorder

Anxiety: Understanding and Coping with a Common Emotional Disorder

Anxiety is a common emotional disorder that affects millions of people around the world.

It is characterized by feelings of worry, nervousness, and fear, and it can have a significant impact on an individual’s quality of life. Despite its prevalence, many people still do not understand what anxiety is, how it develops, and how it can be treated.

What is Anxiety?

Anxiety is a normal response to stress and danger. It prepares us to face a challenge or respond to an emergency by increasing our heart rate, sweating, and tensing our muscles. However, anxiety becomes a problem when it interferes with our daily activities and causes significant distress.

There are several types of anxiety disorders, including generalized anxiety disorder, panic disorder, social anxiety disorder, and specific phobias. Each type of anxiety disorder has unique symptoms, but all share the common theme of excessive, persistent worry and fear.

What Causes Anxiety?

The exact cause of anxiety is not well understood, but it is thought to be a combination of genetic, environmental, and psychological factors. People with a family history of anxiety are more likely to develop the disorder, and traumatic life events, such as abuse, neglect, or loss, can trigger anxiety symptoms. Additionally, chronic stress, substance abuse, and certain medical conditions can also contribute to the development of anxiety.

How to Manage Anxiety

Fortunately, anxiety is a treatable condition, and there are several effective strategies for managing its symptoms. Some of the most commonly used strategies include:

  • Cognitive-behavioral therapy (CBT): CBT is a type of therapy that helps individuals understand and change negative thoughts and behaviors that contribute to anxiety.
  • Medication: Antidepressant and anti-anxiety medications, such as selective serotonin reuptake inhibitors (SSRIs) and benzodiazepines, can be effective in reducing anxiety symptoms.
  • Exercise: Regular exercise has been shown to have a positive impact on anxiety by reducing stress and improving mood.
  • Relaxation techniques: Techniques such as deep breathing, progressive muscle relaxation, and mindfulness can help reduce physical symptoms of anxiety and promote a sense of calm.
  • Lifestyle changes: Simple lifestyle changes, such as getting enough sleep, eating a healthy diet, and reducing caffeine and alcohol consumption, can also help reduce anxiety symptoms.

How Anxiety Affects Me

From a personal perspective anxiety comes and goes. It is the fear of the unknown that can spiral into stress, panic attacks, depression, and procrastination. For example, bearing in mind it is a Sunday so you would not expect any businesses to call you today, yet I noticed a missed call. Not knowing who it was that was calling me, I withheld my number and proceeded to call the number back and I was put through to the DWP.

Update Monday 13th February 2023. I had another missed call today and this time they left a message that they will phone me between 11 -12 despite me telling the PIP assessor I am in University Mon, Tue & Fri. I did accept the call when they rang and they said they are increasing my PIP payments as they needed some more information about my mobility. So it looks like they work Sundays as well.

Stress & Anxiety impact on a sufferer of multiple sclerosis.

Considering I have voice mail activated you would think the person that was trying to reach me would leave a message, but unfortunately, they didn’t which has now made me feel anxious and on edge. Stress and anxiety can cause a person suffering from multiple sclerosis to relapse. Relapsing remitting MS (RRMS) | Multiple Sclerosis Society UK (mssociety.org.uk)

Fortunately, I have my mum as my rock and she tried reassuring me that they will write to you if they cannot get in touch and that I needn’t worry as she will take care of things for me.

Conclusion

Anxiety is a common and treatable emotional disorder through medication, CBT therapy, and hypnosis. It can have a significant impact on an individual’s quality of life. By understanding its causes and learning how to manage its symptoms, people with anxiety can take back control of their lives and improve their overall well-being. If you are experiencing symptoms of anxiety, it is important to seek help from a mental health professional who can provide an accurate diagnosis and develop an effective treatment plan.

#ms #msrelapses #dep #pip #persoanlindependancepayments #stress #wory #anxiety #panicattacks #procrastination

Personal Independence Payment (PIP) Telephone Assessment

Personal Independence Payment (PIP) Telephone Assessment

Written by the Editor Renata M Barnes.

Today my daughter had her PIP assessment over the phone. My daughter told me she had four reminder text messages saying that her phone call appointment was scheduled for 09.15 hrs yet the assessor phoned at 08.45 am and when my daughter did not pick up phoned again at 09.10 am (where is that 09.15 may I ask, did the assessor have cognitive impairment to not phone at the scheduled time)?

The assessor was made aware I was listening in as the call was on loudspeaker.

The duration of the call lasted one hour and ten minutes and in that time my daughter was asked the same questions which were on the questionnaire she submitted.

Breach of GDPR

The caller never said the call was being recorded even though by law they have to say. Furthermore, the assessor did not offer a copy of the call recording which means that the assessor may have been working from home or the call was not recorded at all.

My daughter suffers from Multiple Sclerosis which is a progressive disorder that there is no cure.

There is (HSCT) hematopoietic stem cell transplantation currently not available on the NHS, which aims to wipe out and regrow the immune system similar to Lemtrada Alemtuzumab treatment which my daughter had last year.

Sensitive Questions

The assessor asked the same questions as what was on the form but went into some very alarming questions, some of which were so sensitive that could have caused a trigger in mental health patients, like have you ever had any suicidal thoughts or wanting to self-harm.

No one should be in a position to answer such a question because:

  1. It can cause a trigger and the person may not have had those thoughts before, but may now have a seed planted in their head to do it sometime in the future. When asking such a question you should not put those words directly into a person’s thoughts. It should be handled in a way of “how low do you feel on any given day” and “how do you feel when you are feeling low“? You should not say “have you had suicidal thoughts”? This is a TRIGGER. This type of questioning should only be done by a qualified professional, face-to-face (not over the phone).
  2. Secondly, the person being interviewed may not be truthful if there are many people present. Perhaps the person may not want to admit those thoughts in front of their carer, parent, or a total stranger. Someone who is feeling low and that question is asked, could theoretically not tell the truth to the person asking, yet the option would be there in their minds. One should never plant a seed in someone’s head. Only a professional psychologist or psychotherapist would assess a person’s mental health, not a complete stranger.
  3. The assessor should go by the medical evidence from the doctor’s reports and not ask these questions directly (by asking this question it is deemed as reversed psychology). Only a mental health professional should ask these questions. Talking about suicide is a taboo topic that is very sensitive, one needs to build trust between the person asking and the patient. People with suicidal thoughts may sometimes never admit to having them, so it is best to ask “how low a person is feeling” or “has ever felt” and open up a dialogue, rather than ask that question directly.

Further Reading:

https://lifehacker.com/how-to-plant-ideas-in-someones-mind-5715912

Does asking about suicide and related behaviors induce suicidal ideation? What is the evidence? https://pubmed.ncbi.nlm.nih.gov/24998511/

PIP assessor told claimant to ignore her ‘irrelevant’ suicide attempt… then challenged her son to a fight – Disability News Service

Degrading & Humiliating Questions

  1. Asking the person if they can wipe their posterior is degrading especially when admitting if one can or can’t to a stranger.
  2. What has that got to do with my daughter’s condition she is not in a wheelchair which was made clear at the beginning and is on her medical records. I understand that these questions may be asked but should be directed to the clinician and not the patient.

Work & Studying

PIP is a non-means tested benefit and when deciding a person’s eligibility for support their disability or condition and how it affects their life is taken into account. So what with the twenty questions such as “what is content marketing” etc? (what I have written now is called content).

  1. When my daughter was asked how she gets to university she said she takes a taxi. I noticed a pause from the assessor. So unless she was thinking that would cost an arm and leg, don’t tell me because I already know that is why I help my daughter pay for transportation. So despite telling the assessor my daughter does not walk far, why in the next line of questioning does the assessor ask how far can she walk in terms of a length of a bus? (I thought these questions were not relevant and were no longer being asked).
  2. When asked what work she does my daughter said marketing and how many hours per week. My daughter is the assistant editor of this website so she may work two hours one week or 16 hours the next. It depends on the assignments I give her. My daughter is not self-employed unlike myself. The assessor continued so what is my daughter’s role which she replied writing blog posts. Blog posts can take an hour or can take a whole day to do and it all depends on how many words are written and for what purpose. I have more than one website www.irenata.com I use a link wheel of websites to drive traffic from multiple directions. www.mrketingcardiff.com and www.ukcontentwriters.com to name a few.
  3. My daughter then was asked a question if there was a fire at the university how long would it take her to get out of the building? (How would she know that if she has never had a fire evacuation? The assessor continued to say this was a hypothetical question. This is ridiculous as how would my daughter know where she was at any given point in a worst-case scenario if the lifts did not work it would take her longer? How long is a piece of string? She could be on the top floor. (So does that mean if you escape a fire you have no problem with mobility).

Stress

My daughter was never asked about her stress levels although she did mention the frustration of her disability. Stress and frustration can coincide together but they can also have different meanings. The assessor did not go into too much detail other than how my daughter remembers to take her medication and who feeds the cat (yes that was asked). https://disabledentrepreneur.uk/stress-cognitive-function/

Stress is a complicated disorder in itself. Stress can be prolonged whilst frustration is short-term. The stress of rewriting a blog post or assignment due to a lack of concentration or increased fatigue can cause frustration.

Medication

My daughter was asked what medication she was on and the one medication the assessor said and I quote “Hold on I need to Google it“, this is no word of a lie and I can prove this was said, just don’t ask me how.

Irrelevant Questions

  1. . Who lives with you (why is that relevant)?
  2. How many bedrooms have you got? (and the point is what)?
  3. Who pays the bills?
  4. How long have you done online grocery shopping?
  5. So you have a cat, who feeds the cat, and why?

Pointless Questions!

Final Thoughts From the Editor

I am really looking forward to my assessment because it will open a can of worms regarding the GP support I have not had.

My daughter’s call lasted over an hour, this is not going to happen with me as time is money and I already wasted one hour today listening in to a call that was pointless.

The assessor insinuated because my daughter has a part-time job and is studying it may look like there is nothing wrong with her even though it is her physical well-being that is affected and not her mental health.

I did not think this should be used as a fit for work assessment, but more so as a health and well-being assessment and the prognosis of the ability to function from day to day.

I have disabilities but I still can work by managing my health in such a way it does not hinder me. It is the outside world I have a problem with, because of my OCD and social disconnection issues. However, if I was put in a situation where it was an emergency and had to leave my home, I would worry about the consequences of my disorder afterward. I have literally thrown away things I have not been able to salvage or disinfect. I am the happiest in my own company with my own surroundings.

I run several businesses online for my clients but that does not make me fit to work in the physical world. One should not draw conclusions about a person’s ability because from one day to the next the ability to function can be impaired.

For my own assessment, I have given them enough information, that I envisage my call will be halved. I most certainly will not answer questions like what my daughter was asked today, because they have enough evidence on file. I am not going to answer questions such as am I capable of wiping my own ar#e?

My daughter should have stated she documents her health online but for some reason omitted this. We will have to wait on the decision in 8 weeks’ time.

Multiple Sclerosis is an auto-immune disease that attacks healthy white cells. The lesions that can affect the brain and spinal cord can cause a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation, or balance. It is an incurable disease with lifelong symptoms that can sometimes cause serious disability, although it can occasionally be mild. The average life expectancy is slightly reduced for people with MS and symptoms can be alleviated with different courses of treatments. In most cases, people get diagnosed in their 20s or 30s but it has been known that patients have shown symptoms as young as 15 years of age. In fact, it can develop at any age. It’s about 2 to 3 times more common in women than men.

MS is one of the most common causes of disability in younger adults.

https://www.nhs.uk/conditions/multiple-sclerosis/symptoms/

The most common symptoms include:

Other than fatigue, vision, numbness, and pain nothing else was discussed in the above list or the fact that stress and anxiety can cause MS relapses.

So why is the government somehow wanting people with disabilities to jump through hoops (quite literally) to prove they are disabled when their medical records should suffice?

I would have put a stop to the questioning and said so what do you know about multiple sclerosis or in my case OCD & cerebellar atrophy. Secondly, I would have said… so I gave you access to my medical records but clearly, you have not read them.

I reckon these assessors have to do something to sift through the scammers in this world, but the people that genuinely need help, are made to feel belittled, degraded, and inadequate just to get the extra bit of help.

Further Reading

PIP assessor walked out! – Benefits and Work Forum

Pip assessor has lied – Benefits and Work Forum

PIP Assessors Get £50 Bonuses For Meeting Targets Says Whistleblower | Same Difference (samedifference1.com)

PIP investigation: ‘Lie after lie after lie’ – Disability News Service

Fury As Nurses Offered Private Healthcare Perk To Become DWP Benefits Assessors | HuffPost UK News (huffingtonpost.co.uk)

‘Humiliating’ PIP Assessments Being Held At Luxury Spa Owned By Millionaire Duncan Bannatyne | HuffPost UK News (huffingtonpost.co.uk)

MS Relapses

With multiple sclerosis, the weather plays an important factor and people suffering from MS can relapse when the weather is too hot or too cold.

MS and Cold Weather: Are MS Symptoms Worse During Winter Months? (webmd.com)

Cold Weather and MS Symptoms: Effects and How to Cope (verywellhealth.com)

Therefore with the rise in the cost of living and keeping one’s home warm the extra bit of money helps. Yet this was not discussed, which tells me the assessor had no knowledge of Multiple Sclerosis.

The assessor said I quote so you are making an effort to work and let the disability stop you, sorry I am not being patronized even though it came across that way.

I did want to put my two penneth in, but I figured that it was best to keep my mouth shut and see what happens when the decision is made for my daughter.

The Assessor

The assessor should have:

  1. Stuck to the given scheduled time and not rang half an hour earlier.
  2. Said if the call was being recorded or not and asked the interviewee if they wanted a copy of the call recording.
  3. The assessor should have also introduced herself properly (which she did not) and said what she was qualified in (which again she didn’t).
  4. The assessor should have acknowledged the other person listening to the call but chose to ignore them (which was deemed unprofessional).
  5. The assessor should not ask extremely sensitive questions to cause a trigger.
  6. The assessor should have gone by the medical records to gain all the information she needed without humiliating the interviewee.
  7. The assessor should not have asked irrelevant questions such as who feeds the cat and why?
  8. The assessor should not have spoken about her own health issues as that is unprofessional.
  9. Asked how long the household did online shopping (how is that relevant to the claimant when we were in lockdown which had nothing to do with the claimant’s illness).
  10. Asked to explain what content was in my daughter’s job role.

As for me, let the circus begin, I can’t wait!

#personalindependencepayments #pip #pipassessment #pipassessor #multiplesclerosis #ms #humiliation #suicidalthoughts #triggers #telphoneassessments #callrecordings #gdpr

Personal Independence Payment (PIP) Assessments

Personal Independence Payment (PIP) Assessments

What is a PIP assessment?

Under normal circumstances a  PIP assessment is an opportunity for you to talk about how your condition affects you – it’s not a diagnosis of your condition or a medical examination.

The DWP will use evidence from the assessment to help them decide if they need PIP.

Therefore it is best to make your own report and detail everything about your illness and how you manage your daily activities.

An in-depth report is evidence that can be used against the DWP if your claim is denied. Having a phone call you cannot record the conversation.

Concluding the call you should ask for a copy of the recording which you are entitled to have by law.

People have the right to request copies of the data that is held by an organization, the ability to search and copy recorded calls will be necessary. Requests of this type must be responded to within one month. GDPR and Legitimate Interest. https://www.compliancejunction.com/gdpr-rules-recording-calls/

A health professional will carry out your assessment, write a report and send it to the DWP.

Talking about how your condition affects you

A helpful guide on the Citizens Advice website says that you should be prepared to talk about how your condition affects you even if you have already detailed it on your PIP claim form.

This can be hard to do, but it will really help if you can talk about:

  • the kind of things you have difficulty with, or can’t do at all – for example, walking up steps without help or remembering to go to appointments
  • how your condition affects you from day to day
  • what a bad day is like for you – for example, ‘On a bad day, I can’t walk at all because my injured leg hurts so much’ or ‘On a bad day, I’m so depressed I can’t concentrate on anything

It is a good idea to have your own copy of your PIP claim form with you for telephone assessment, that way you can refer back to it.

I strongly suggest on headed paper write a concise report detailing your illness without leaving out a single thing.

Discrimination

A disabled lawyer launched a ground-breaking legal case against the Department for Work and Pensions (DWP) over his claim that it deliberately discriminated against him in rejecting his claim for disability benefits. Daniel Donaldson founder of the Scottish social enterprise law firm Legal Spark, believed DWP chose to discriminate against him and other people with mental health conditions in the way it has dealt with their personal independence payment (PIP) claims.

This is very worrying if the DWP has discriminated against a lawyer. Although the article about Donal Donaldson was published in 2018 it is very worrying how the government is playing God with people’s lives who genuinely need help.

Daniel ended up taking the DWP to Glasgow Sheriff Court and was seeking nearly £5,000 in damages, to cover bank charges, the removal of his bus pass, and £4,000 in compensation for the discrimination.

Donaldson sued the DWP Equality Act against the Scottish government because it failed to take on responsibility for PIP from DWP when it had the powers to do so in 2016.

A Scottish government spokesman said:

“We have repeatedly called on the UK government to halt the roll-out of PIP in Scotland, most recently following the report of the UN Committee on the Rights of Persons with Disabilities which called for a review of PIP due to the damage it is causing people”.

Donaldson said the “UK government had created “a hostile and degrading environment for disabled people” by “using public policy to strip people of their statutory entitlement to benefits”, including PIP and employment and support allowance (ESA)”.

You can read the full story here: Disabled solicitor launches ground-breaking legal case over PIP discrimination – Disability News Service

Useful Links

Discrimination: your rights: What you can do – GOV.UK (www.gov.uk)

Equality Advisory Support Service (EASS) – GOV.UK (www.gov.uk)

My Concerns about the up-and-coming assessment for my daughter

Circus Monkey!

Assistant Editor

My concern is my daughter who has Multiple Sclerosis and is also the assistant editor of ‘Disabled Entrepreneur – Disability UK Journal’, according to the MS Society, the DWP is making it even more difficult to claim. PIP fails | MS Society

It is soul-destroying having to justify you have an illness. People should not have to be made to perform like circus monkeys to prove they are ill. The assessment is on the 5th of January 2023. I will be listening to the call.

My daughter has already expressed anxiety and stress and is worried about taking the call.

PIP Email Address

I have advised my daughter to write a letter and attach it to an email prior to the assessment call, this adds extra weight to your claim and creates a carbon footprint of evidence.

PIP say they do not have an email address even though they do😂 : contactus@capita-pip.co.uk

Medical evidence should suffice. A primary neurologist consultant is far more qualified than any PIP assessor”.

An Assessors Qualifications

According to Capita’s, website to be an assessor you may be a nurse, occupational therapist, paramedic, physiotherapist, pharmacist, speech and language therapist, or clinical psychologist who is looking for a change, for new opportunities.

As a Disability Assessor, you’ll:

  • be a fully qualified healthcare professional 
  • have a minimum of one year’s post-full registration experience
  • be fully registered with a relevant UK regulatory body (NMC/HCPC/GPhC or other), without restriction or conditions and with a valid PIN
  • live and be based in the UK 
  • have sound written communication skills
  • be able to manage conversations and ask questions effectively
  • be confident with computers 

Who we’re looking for | Capita PIP Careers (capitapipjobs.co.uk)

This proves that they do not have to have to be specialists in any disorder. A nurse has general knowledge of how the body works but is not specialized in any field other than nursing.

According to the Royal College of Nursing:

All registered nurses must choose from one of four specialisms as part of their nursing degree – adult nursing, children’s nursing, mental health nursing, or learning disability nursing. It’s possible to change after graduating, but this doesn’t mean your career is decided. 

Adult nursing

Adult nurses work with patients over 18. They can work in hospitals or in community settings such as people’s homes, health centers or nursing homes.  Once qualified, they can take extra courses to specialize in areas such as cancer care, women’s health, accident and emergency, critical care, practice nursing, health visiting or school nursing.

Children’s nursing

Children’s nurses work with children and young people up to 19 years old and can work in a variety of settings, from specialist baby care units to adolescent units. Children react to illness in a very different way from adults, and children’s nurses are specially trained to understand their needs. Children’s nurses also support, advise and educate parents and carers. Once qualified, they can specialize in areas such as health visiting, school nursing, intensive care, child safeguarding, and cancer care.

You cannot confuse a nurse with a doctor or specialist. A nurse will not have the same qualifications as a doctor, neurologist, consultant, or psychiatrist.

What is Multiple Sclerosis

Multiple Sclerosis (MS) is a chronic, neurodegenerative condition for which there is currently no cure.

In MS, the body’s immune system attacks myelin, the protective cover around nerve fibers. Damage, which can occur anywhere in the central nervous system, interferes with messages traveling from the brain and spinal cord to other parts of the body. Symptoms are many and varied but unique to each person. They can include problems with balance, vision, the bladder, bowel, speech, memory, fatigue, and painful muscle spasms, among many other things. MS affects over 100,000 people in the UK, many of whom experience their first symptoms during the peak of their working lives, in their 20s and 30s. MS is both a fluctuating and progressive condition. While the progression and symptoms of MS vary from individual to individual, primary progressive MS affects around 10 to 15% of people with MS. This is progressive from the very first symptoms. The remaining 85% of people with MS are initially diagnosed with relapsing forms of MS, where people have distinct attacks of symptoms with the underlying damage building up over time.

Many people with MS will go on to develop secondary progressive MS within 15 years of being diagnosed.

“Having MS is debilitating – it shouldn’t be made harder by a welfare system that is humiliating, degrading, and adds more stress which can lead to relapses. Stressing an individual out to the point that they relapse could consequently make that person lose their mobility and become bedridden”.

If a person with Multiple Sclerosis relapses because of the stress they endure fighting for something that should help them, then the government should be made accountable.

Relationship between stress and relapse in multiple sclerosis: Part I. Important features – PubMed (nih.gov)

From a personal perspective, my daughter did actually relapse after being frustrated with her laptop not booting up consequently hurling it across the room. So stress is definitely a factor, that should not be ignored.

#personalindependencepayments #pip #ms #multiplesclerosis #pipassessment #stress #anxiety #dwp #capita #msrelapses

My GP & Neurologist’s Negligence

My GP and Neurologist‘s Negligence

I phoned my GP today after waiting two months for a prescription that my neurologist consultant had prescribed for my unbearable pain which is caused as a result of my multiple sclerosis and yet, to this day I have not had the medication.

When I queried it today, the receptionist I spoke with stated that he was not ‘medically trained’ to read the letter sent from the neurologist at the hospital and that I would have to wait for the doctor to read it and approve. This goes to show the mentality of the receptionists at my GP as mentioned previously, he stated he couldn’t read my letter as he was not ‘medically trained’, when in reality, he shouldn’t be reading my letter at all as that would breach Data Protection Act 2015. None the less, I gave the GP the benefit of the doubt and continued to wait for my medication.

A few weeks go by and I get a call from the GP, although to my surprise it is not the doctor but a different receptionist. The woman I spoke with informed me that she was passing on a message from the doctor stating I had to have a consultation to discuss the medication at hand. When I questioned why I would need to discuss the medication when I had already done so with my consultant, she could not reply. As a result of this, it meant that I would have to ring up the GP at 8am the following day to fight for an appointment to then have to wait all day for a doctor to give me a call back.

Why do I need a consultation with the GP when my consultant who is a qualified neurologist has prescribed them?

I believe this is to test people and for them to beg to get medication. So am I to believe my general practitioner doctor is more qualified than the neurologist? This is now causing me anxiety and stress. Stress can lead to MS relapse.

So they cannot book an appointment at the time of the phone call, you have to be a good soldier and do as they ask.

When I told my mother who is also my carer, she said she would intervene and write a letter (which never gets answered, may I add) demanding that I have the medication otherwise my mother would take it up with the ombudsman.

I am worried I will get kicked out of the surgery as I am dependent on my drugs for the excruciating pain I endure, so told her not to pursue it. I have been threatened by this surgery before regarding not agreeing with some of the things they say. Both my mother and I have agreed that I contact my primary neurologist and explain not only have I fallen through the gaps regarding getting my monthly blood as stipulated on the Lemtrada website but my GP is refusing to give me the medication that the consultant requested.

This is Medical Negligence!

I am documenting this as evidence that my quality of life is being compromised because of my GP not giving me my medication and my concerns that my blood is not being tested to monitor any changes to catch them early.

This will be forwarded to PIP (Personal Independence Payments).

I will update again once I get further information.

My GP Google Reviews

Update 15/12/22

I phoned my GP to book a consultation under duress otherwise I would have had hope in hell to get my medication, even though it was prescribed by a neurologist.

The doctor did phone me back only to ask me what I needed to talk about…OMG.

When I said about my medication she continued to ask which medication I was referring to, even though supposedly there was a message on my notes. She then asked if I am capable to take them…..what the hell?

What a waste of time and resources.

The doctor did not even know why she was ringing me other than me requesting a callback which I was put on the spot to do, otherwise, I would not have had my meds.

And people wonder why they struggle to get a GP appointment, this is a perfect example as to how the GP waste resources, time and effort. This appointment could have been utilised for someone who actually needed it, not for a chit chat.

Further Reading:

https://cavuhb.nhs.wales/

Prescribing in general practice (bma.org.uk)

Public Services Ombudsman for Wales

https://www.jcpsolicitors.co.uk

https://www.thorntons-law.co.uk/knowledge/to-sue-or-not-after-medical-negligence

Update 20/12/22 – Non-existent blood tests!

My non-existent blood tests (required by law).

After losing my patience waiting for my non-existence letter to arrive to notify me to have my blood test done, I decided to contact my primary neurologist by email. Baring in mind I am supposed to have a blood test done every month to prevent/pick up early, transfusion related conditions such as Immune Thrombocytopenic Purpura (ITP), kidney problems/anti-GBM disease and problems of the thyroid gland (hypo/hyperthyroidism). As I am writing this, it has been 7 weeks since my last blood test and yet my primary consultant could not care less, he is obviously happy I have lined his pockets ready for Christmas.

Granted he was quick to respond.

The unfortunate thing is, had I of not emailed him, he would have been none the wiser that I had not had any blood work done. Surely, as my primary consultant, it is his responsibility to ensure that as his patient, I am having the necessary tests to ensure I am ok.

Not only that, he confirmed my blood test on the 2nd November was okay, would he have not noticed that I was not scheduled for a repeat test for the following month? Would he have not spoken with the other neurologist that I saw last? Do people within the hospital even communicate with one another, or is that my responsibility too?

I did mention that I understood Royal Mail was on strike and the nurses and emergency service are following suit. I was concerned that I have not had any blood tests done and my neurologist replied to sort it out myself and phone his secretary.

Why should I go out of my way to chase blood tests?

I have always had my blood taken at the hospital so why suggest I have them done at my GP who is also as useful as a chocolate fireguard?

Why move the goalposts? Why try to fix something that is not broken, meaning continue to have my blood taken at the hospital?

It is the responsibility of the consultant to make sure I have a blood test done and not down to me to do their job for them.

I can see pound signs of their lack of empathy and aftercare for their patient.

If something is found that could have been prevented all hell will break loose, mark my words.

What the Government Has to Say:

Lemtrada▼ (alemtuzumab): updated restrictions and strengthened monitoring requirements following a review of serious cardiovascular and immune-mediated reactions

A review of the benefits and risks of alemtuzumab (including fatal reactions) in the treatment of multiple sclerosis has now concluded and recommended a revised indication, additional contraindications, and strengthened monitoring requirements before, during, and after treatment. Patients offered alemtuzumab should be alerted to the early risks of cardiovascular events and thrombocytopenia around the time of infusion and to the delayed risk of immune-mediated reactions. Healthcare professionals should inform patients what to do if they develop any symptoms of these disorders.

https://www.gov.uk/drug-safety-update/lemtrada-alemtuzumab

https://www.ema.europa.eu/en/medicines/human/referrals/lemtrada

Meeting highlights from the Pharmacovigilance Risk Assessment Committee (PRAC) 28-31 October 2019 | European Medicines Agency (europa.eu)

He has had his commission so I am not a priority even though under the Alemtuzumab Guidelines I have to have my blood checked every month.

lemtrada-article-20-procedure-lemtrada-multiple-sclerosis-measures-minimise-risk-serious-side_en

My primary consultant came up with all these fancy words as if I am supposed to understand even though I am not medically trained.

And we wonder why the NHS is in the state it is in because no one seems to be doing their jobs properly, yet everyone is complaining they are overworked and underpaid.

Be lucky you have a job is all I can say”.

Lucky Black Cat
My MS Therapy Cat (Tibbles).

#gpnegiligence #prescribedmedication #neurology #neurologist #neurologistconsultant #consultant #specialist #ms #multiplesclerosis #MeddygfaAlbanySurgery

Multiple Sclerosis Monthly Blood Tests as required by Alemtuzumab Lemrada.com

Relapsing MS Stories: Speaking Up About Treatment (lemtrada.com)

Multiple Sclerosis Monthly Blood Tests as required by Alemtuzumab Lemrada.com

As my followers know I suffer from multiple sclerosis and have had the ‘alemtuzumab’ treatment which clearly stipulates on the Lemtrada website that patients should have monthly blood tests done to help detect side effects early.

Upon having a recent consultation at Rockwood Hospital Cardiff, part of the UHW Neurology Department, the consultant asked me when did I have my blood test done. Surely he should have had that in front of him and not relied on a patient to update him. This is poor management and medical care.

So after it was established I have not had my blood test done for a good few months, he said he would arrange for them to be done every month because during Covid Lockdown it was every 3 months and we are no longer in lockdown, so there should be no excuse. (This is against the terms of Lemtrada policy).

Lemtrada website says: BEGIN YOUR MONTHLY MONITORING

Certain side effects of LEMTRADA can happen months and even years after treatment. That’s why it is important to begin monitoring after your first infusion and continue regular monitoring until 4 years after your last infusion. Monitoring can help your healthcare team find potential side effects early.

What to Expect After LEMTRADA® (alemtuzumab) Infusion Treatment

So we are nearly in the month of December and after my consultation in October, I am still waiting for a letter to see when I should have my blood test done.

I should not be the one to be chasing them. It is their job to make sure patients have regular blood tests!

This in my eyes is NHS medical negligence.

Clearly the consultant I went to see did know what he was doing because the letter he wrote to my doctor contradicted his statement as I am on the highest dosage of painkillers Gabapentin. I wrote to my neurologist and asked for the error to be rectified, which has now been updated.

https://www.lemtrada.com/what-to-expect/after-treatment

https://products.sanofi.us/lemtrada/lemtrada.html#medguide

I should not be going out of my way to remind them to do their jobs, it is their responsibility to make sure I have my monthly blood tests done”.

Update 09/12/22

It has been five months since my last treatment and I have only had one blood test done. I am going to see if the meds that the consultant prescribed are ready for collection and if not I will be writing a stern email to the Professor of Neurology.

#multiplesclerosis #ms #alemtuzumab #sanofi #lemtrada #medicalnegligence #neurology #neurologist #nhs #uhw #rockwoodhospital

Lucky Black Cat