Medical breakthroughs for MS one woman’s story.

[SheffieldJane]

bbc.in/2FA3lU6

Just made me glad that this wasn’t my diagnosis and also wonder whether I would have her courage. Just for interest rather than relevance.

[Hidden]

Wow! ... just WoW!

[DorsetLady PMRGCAuk volunteer]

What a brave lady...but having seen her reports over the years I’m not surprised. Here’s hoping she can enjoy what time she has.

Knocks GCA into a cocked hat!

[SheffieldJane in reply to DorsetLady]

It doesn’t always help to consider that others are worse off, but this did. Of all the autoimmune diseases I think I am relieved that I got PMR.

[Soraya_PMR]

Goodness that’s a toughie. Bit of a gamble, stem cell or no stem cell.

[PMRpro Ambassador]

I did a massive project report on MS when interferon was first used - it had me in tears.

[SheffieldJane]

I can imagine it would.

[karools16]

Thanks for that SJ. Incredible story. Also sad that the old saying 'because I looked so well' applied to her as well with diagnosis delayed 16 years. No, I could definitely not have endured any of that. Miracle doctors in Mexico, giving people hope and a chance of living.

[artfingers]

They are doing more and more with stem cells, I just wish there was more money for research. Big pharma is in it for the money, alas. A difficult journey for her. We now think my sister-in-law has MS. But she isn't a fighter like this woman. Interesting to me was how her brain fog lifted after her treatment. That along with the fatigue is the part of our disease that makes it so difficult for me to keep teaching. What a well written story!

[SheffieldJane]

I am lucky not to have to take my brain fog into the workplace anymore. Pre diagnosis it was humiliating at times. I would just go blank, if asked a simple direct question. I really blamed myself. I joke about it now and family pretend that they are just the same, but they are not.

[Telian]

What a story! I've only just seen this and my emotions have run wild reading it, particularly as my 52 year old brother, who's wife is fighting leukaemia, has recently been diagnosed with MS. He is just starting his treatment and is suffering. My niece has MS, diagnosed when she was 30 - 3 years ago, so fair to say it's in the family!

You might have read intermittent remarks re my current health situation and MS but I am now prompted to share my burden for a second.

18 months after diagnosis of GCA/PMR Professor D told me I should not be getting the headaches and referred me to Neurology. I tested positive for MS via MRI on the brain, eye evoke test, and lumbar puncture. That was 18 months ago.

I have just received the results of my now annual MRI on the brain and it shows no further deterioration, there are lesions that are typical of MS BUT because I already have an autoimmune illness I am being monitored. I have some of the symptoms Carolyn Wyatt describes re brain function and muscle weakness in the arms, I don't fall but I stumble. I just put it down to GCA/PMR, we joke about brain fog but deep down I know this is a little more for me. I began to walk out of the supermarket yesterday without paying for my shopping, only when I could see my shopping unbagged did it click, I turned on the spot. It was the strangest feeling like I had no control - clearly I 'lost it' for a second. Afterwards I did wonder how many people intentionally do just that now it's 'bring you own bag' culture as no one challenged me, but I digress.

I am told that as my latest scan shows no further deterioration - hoorah! - that I am stable and will not be put on disease modifying drugs unless I show more visible symptoms - currently, and after reading CW's report, I know that I am ignoring some of my symptoms or at the least blaming them on current known illness, therefore not telling my Neurologist, because they are mild - sometimes.

It doesn't change my attitude towards it all in fact it makes me more determined that unless things get really bad I do not want to start treatment unless a: they can tell me I will not suffer side effects and b: it will halt the symptoms. Clearly there are no definitive answers to them and I hold the thought that I will not get any worse and I remain stable or even go into remission.

[PMRpro Ambassador in reply to Telian]

Wishing you all the best - at least if you do require medication at some later point the situation is an awful lot better than it was when I first learnt a lot about MS when interferon was being developed and I worked on translating reports for the clinical trial marketing surveys. Hugs

[Telian in reply to PMRpro]

Thank you PMRpro, I always say treatments are improving all the time and you have helped by confirming that. I'm keeping positive but don't know an awful lot really, I've been too busy with my other conditions but above all I intend to remain positive, It's the only thing I know how to do well... Hugs gratefully received..

[SheffieldJane]

Thank you for sharing your story with us Telian. My beloved paternal Grandma had MS. She remained avidly interested and interesting and cheerful throughout. Quite a high bar to set for me.

I am very glad that your scan shows no deterioration.

I can’t cope with self service tills at the best of times.

Wishing you the best of everything!

[Telian]

Thank you Jane, I intend to be the same as your Grandma. I've always been a glass half full person and have no plans to change.

It's a long time since I heard Grandma, reminds me of mine and because of 3 generations together my Mum was Nanna and me Nanny to differentiate - brought back good memories.

Thank you for the good wishes.

[SheffieldJane]

Lucky grandchildren! All that love and understanding. I sent my grandson a Winnie the Poo book ( to Australia) when his dad got in from work he said “ daddy, daddy granny has sent me a “ we need a poo” book. I wanted to tell another Nanny.🤣