Symptoms – Another MS Warrior

67 HSCT trial outcome …it’s good news!

This has been an exciting week in the world of MS and HSCT, as the final analysis of the MIST trial has been published in the Journal of American Medical Association (JAMA).

The trial compared the effectiveness of HSCT against a control group of patients who were given conventional Disease Modifying Therapies. The trial included patients treated at 4 centres across the world – Chicago, Uppsala (Sweden), Sheffield and São Paulo (Brazil).

The findings of the trial were that HSCT was more effective in terms of halting disease progression than any DMT.

This visual summarises the findings …

Here is a link to the published report …

Effect of Nonmyeloablative Hematopoietic Stem Cell Transplantation vs Continued Disease-Modifying Therapy on Disease Progression in Patients With Relapsing-Remitting Multiple Sclerosis : A Randomized Clinical Trial

As you can imagine, this has caused a huge ripple in the medical world and it is now estimated by some that HSCT as a treatment for MS could be FDA (US Food and Drug Administration) approved within 2 years.

Here’s CNN’S take on it …

Stem cell therapy for relapsing MS proves effective and safe, study finds

“HSCT proved to be the more effective treatment: Of 55 patients receiving HSCT, only three patients showed disease progression at one year, the study showed. Yet, 34 of 55 patients in the disease-modifying therapy group showed disease progression at one year. Disease progression was measured using the Expanded Disability Status Scale, a method for monitoring changes in symptoms over time.

Among the HSCT group, the proportion of patients with disease progression was (roughly) 2% up to two years, 5% at three years, and 10% at 4 and 5 years. Meanwhile, the proportion of patients with no evidence of disease — defined as no progression, no relapses, and no new or enlarging lesions on MRI scans — was (nearly) 98% at one year, 93% at two years, 90% at three years, and 78% at four and five years.”

I am more determined than ever to get to Russia and have HSCT …it feels good to be part of this MS revolution.

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Since writing my previous post recording my current symptoms, I keep thinking of one’s I’ve left out. I’m going to add them to the list in italics.

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66 Current symptoms

I have been advised to record an audit of my current symptoms, so here it is! I’m going to use the symptom list from the NHS website as headings:

Fatigue

I experience fatigue often. I still manage to work 4 days per week but find this exhausting. I am no longer able to do everything I want to do and I need to ration my energy and allocate recovery time. I avoid doing anything after work and have had to cancel several social commitments.

Vision Problems

Thankfully I don’t have any MS related vision problems.

Numbness and Tingling

This is an everyday problem for me, in fact I haven’t had a day without numbness and tingling for over 2 years. I get this in both feet and legs and sometimes in my left hand and it is noticeably worse when I’m cold. My left foot in particular feels like a cold, dead, heavy weight on the end of my leg!

Muscle Spasms, Stiffness and Weakness

This is also an everyday problem for me. My legs are stiff and painful, especially when I get up in the morning or after sitting for a while. Basically, when I stand up, I’m never quite sure what my legs are going to do! I sometimes have spasms and twitching in my left leg. I know I am much weaker than I used to be (but this is partly due to me being less active). I have noticeable weakness in one side of my left hand .

Mobility Problems

There are lots of things that contribute to my mobility problems – issues with balance, spasticity (stiffness), weakness, numbness and lacking confidence all contribute. I feel much safer when using a walking stick, especially on uneven or sloping surfaces. My EDSS (expanded Disability Status Scale) score was assessed as 4 by my neurologist in June 17 and as 6 in November 2018. It was just 1.5 twelve months prior to this. I’m not sure that I agree it is 6 now as although I require assistance for walking, I can still walk on flat uneven surfaces unaided.

Pain

I have some nerve pain on the left side of my body. During my last relapse, this was particularly painful (I’m told it feels like shingles pain) – thankfully it has faded to manageable levels, though has never disappeared. The spasticity in my legs is painful at times.

Problems with Thinking, Learning and Planning

In the MS world this is known as Cognitive Fog or Brain Fog. I know I have this, although it is very hard to assess or measure.

Depression and Anxiety

It is very difficult to NOT be depressed and anxious when you have MS!

Bladder Problems

Thankfully I don’t have bladder problems. During my last relapse I had a common problem experienced by people with MS where I knew I needed to go but couldn’t! This is caused by damage to the spinal cord in the area that leads to the bladder, so the message from the brain doesn’t get through. Luckily this wasn’t permanent, but it remains one of the things I most worry about as my MS progresses.

Bowel Problems

Thankfully I don’t have bowel problems.

Speech and Swallowing Problems

I don’t have swallowing problems and my speech problems are limited to sometimes being unable to recall a word for something (linked to brain fog rather than a speech problem). About 4 years ago I had a period of slight slurring and was aware this was linked to the way the left side of my face and mouth moved.

Balance

For some reason balance isn’t on the NHS list, yet it is a very common problem for people with MS. My balance has got steadily worse over the last 18 months.

Additional symptoms added 18.01.19.

44 What does it feel like to have MS?

Trying to describe how it feels to have MS is like trying to describe colour to someone who can only see in black and white! It doesn’t feel like anything else, so there is no way of explaining it to someone who hasn’t experienced it.

Wobbly legs, weird sensations, balance issues, vertigo, pain, tremors, tingling, spasticity, funny walk, poor grip, weakness, numbness, spasms, general clumsiness …these are just some of the physical symptoms of MS that I’ve experienced.

Everyone’s experience of MS is different and most MSers find that their symptoms can change over time and can vary day to day, or even hour by hour. I’m sure it must confuse some people to see me one day appearing to walk around without a care in the world and the next day to be limping and hanging on to the furniture!

Earlier this year, MS Ireland decided to let people have a small taste of what it’s like to live with MS. This video has been well received by the MS community as it demonstrates some of the small but multiple struggles MSers face every day …

The MS Ireland website can be found here.

I remember trying to describe my difficulties with walking to my children when my symptoms began. Then I found this picture online and it helped them to understand …

I don’t mean that I see the floor that way, it’s just that’s how it feels to walk on a flat surface most of the time – slopes, steps, cobbles, uneven ground, all just add to the fun! So if you see me walking on a flat surface, without a stick, please be aware that this is something that now requires concentration!

You can find out more about the common symptoms of MS on the MS Trust website …

www.mstrust.org.uk

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