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Month: January 2021

What is Multiple Sclerosis (MS).

Amongst my knowledge of OCD and Cerebellar Atrophy I have been thrown into the deep end with Multiple Sclerosis. The reason for this, my daughter was diagonosed with it at the age of 15. It was a shock to the system for the both of us to learn about the disease, the diagnosis and what treatments there were and what are available.

At the time my daugher was put on Lemtrada (alemtuzumab).

I had concerns when I read that the treatment was still going ahead even though European Medicine Agency (EMA) had taken it off the market. The hospital and EMA said that no new patients would be having to drug but the patients already on it would have to finish the course.

RED TAPE!

I personally think there was political red tape and that is the reason the drug had to be continued with existing patients as it cost too complicated to get a refund, I may be wrong but no one has stepped up to correct me.

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

Lemtrada suppresses the immune system for some time after a treatment course so people will be more vulnerable to infections such as colds and viruses.

LEMTRADA can cause serious side effects including:

Serious autoimmune problems:

Some people receiving LEMTRADA develop a condition where the immune cells in your body attack other cells or organs in the body (autoimmunity), which can be serious and may cause death.

Serious autoimmune problems may include:

  • Immune thrombocytopenic purpura (ITP), a condition of reduced platelet counts in your blood that can cause severe bleeding that may cause life‑threatening problems.
  • Call your healthcare provider (HCP) right away if you have any of the following symptoms: easy bruising; bleeding from a cut that is hard to stop; coughing up blood; heavier menstrual periods than normal; bleeding from your gums or nose that is new or takes longer than usual to stop; small, scattered spots on your skin that are red, pink, or purple
  • Kidney problems called anti‑glomerular basement membrane disease, which, if not treated, can lead to severe kidney damage, kidney failure that needs dialysis, a kidney transplant, or death.
  • Call your HCP right away if you have any of the following symptoms: swelling of your legs or feet; blood in the urine (red or tea‑colored urine); decrease in urine; fatigue; coughing up blood.

So its no suprise that On July 3, 2020 Sanofi Genzyme was notified that Lemtrada Home Phlebotomy Partner, Examination Management Services Inc., (EMSI) has gone out of business.

https://www.lemtrada.com/

Because of this, unfortunately, all future Lemtrada Home Phlebotomy (lab draw) visits from EMSI have been cancelled.

Patient safety is Sanofi Genzyme’s #1 priority (thats a joke if I ever heard one as my daughter was still administerd the drug after the EMA said it was unsafe) and they continued to say they are working to provide an alternative phlebotomy solution as well as coordinate alternative testing options for your next monthly lab tests.

This tells me that the company had to do refunds and the NHS here in the UK were slow and had already paid the doctors.

I wrote an article on my other blog how Doctors get a commission from pharmaceutical companies for promoting drugs.

You can read the article here:

https://marketingagency.cymrumarketing.com/2019/10/15/lemtrada-alemtuzumab-sanofi-genzyme/

Doctors receiving money from pharmaceutical companies.

https://www.telegraph.co.uk/news/2016/06/30/individual-nhs-doctors-receiving-100000-per-year-from-drugs-firm/

I personally think when I first learnt about this that I was angry that the NHS knew the risk, yet used my daughter as a lab rat.

If you have any questions related to this announcement, please contact your healthcare provider or your One to One Nurse at (USA) 1-855-557-2483.

If you are in the UK contact your MS Team, or speak to the Ward Manager or Professor assigned to your case.

Multiple sclerosis (MS)

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 symptons can be alliviated with different courses of treatments.

In most cases people get diagnosed in their 20s or 30s but it has been know the patients have showed symptoms as young as 15 years old. 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:

Cerebellar atrophy

Cerebellar atrophy is associated with MS and is more extensive in patients with secondary progressive MS and those with longer disease duration when compared with people who have relapsing–remitting (RR) MS and/or shorter disease duration. Cerebellar atrophy has been shown to correlate with clinical measures of disability.

Multiple sclerosis (MS) commonly affects the cerebellum causing acute and chronic symptoms. Cerebellar signs contribute significantly to clinical disability, and symptoms such as tremor, ataxia, and dysarthria are particularly difficult to treat.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3281565/

For Further Information Contact the Following Links.

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

https://www.nationalmssociety.org/What-is-MS

https://www.mssociety.org.uk/

https://www.webmd.com/multiple-sclerosis/default.htm

https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5487391/

https://jnnp.bmj.com/content/88/12/1065

https://journals.physiology.org/doi/full/10.1152/jn.00245.2018

Royal Mail VS Other Couriers.

Royal Mail Vs Courier.

This post is a mixture of two posts rolled into one (no pun intended).

  1. The First Being Logistics.
  2. The Second About Disabilities.

History of Royal Mail was originally established in 1516 as a department of the by the Royal Family. The company’s subsidiary company Royal Mail Group Limited which operates the brands Royal Mail (letters) and Parcelforce Worldwide (parcels).

The company provides mail collection and delivery services throughout the UK and is now a private company after it’s shares where floated on the stock exchange in 2015.

https://en.wikipedia.org/wiki/Royal_Mail

GRIEVANCE

Now my grievance is that such a big company has no online chat and if one wanted to lodge a complaint this is what they say “We are currently experiencing very high call volumes”, this tells me their service is not up to scratch and they have not employed enough people to deal with the demand and are delivering a poor service. The reponse time is between 10 and 35 days.

For people with mental health an immune disorders this is absoulutely inacceptable.

Employ more staff or give up your yearly bonuses and have a cut in salary meaning salaries from the top and that way you will be able to afford to employ more people.

Just because you are a PLC company there have been many before you which have tried and failed in our current climate with businesses going bust left right and centre.

You have to stay ahead of your competion, you need to dig deep into your pockets to survive.

Furthermore their website is not straight forward to navigate and I should know as I build websites.

“There should be no room for error”.

Any decent company should have online chat.

So this is the domino effect of a company simply not doing their jobs properly as I will explain:

Two parcels were sent on the 12/01/21 from the same Royal Mail Post Office, one to ‘Amazon’ and the other to ‘Pretty Little Thing’. The Amazon notification came within 24 hours and refund within 48 hours but for ‘Pretty Little Thing’ the parcel is still in the sorting office even though ‘Royal Mail’ aim to deliver in one working day.

Now considering there is a time frame for when things can be returned and my daughters return date is bordering on the deadline, you would think they would speed things along.

My daughter who suffers with Multiple Scleroris is on the verge of having a relapse because of ‘Royal Mail’.

Multiple Sclerosis can leave a person wheelchair or bed bound, so as her carer I think it is only right to ruffle a few feathers.

To think before Christmas someone refused to use Royal Mail to send a fragile gift and I tried defending the company I now have egg on my face, so has my daugher.

Unless the company can up with a quick plan of action I will not be saying a good word about this company.

The CEO is Stuart Simpson.