- Introduction- - (apologies to those who have read this on another MS support site).
I am 55 yrs old, and have had a ‘interesting’ life… I am a practising nurse, but also have a very creative streak…in my previous career I had a stained glass studio working on architectural stained glass. I now do wet felt paintings, make rag rugs, repair cane and rush chairs and have taught myself to play the fiddle.
I am married with two children, 30 and 27 yrs…lots of animals to look after, 2 dogs, cats, 2 riding horses, sheep, hens and occasionally pigs. We live on a smallholding in Scotland some distance away from the rush of city life.
I haven’t yet had a diagnosis, but the neuro/ms consultant thinks there is a strong possibility that I have MS ( based on the symptoms and the patterns) and has requested MRI scan, and probably then a lumbar puncture. The MS Consultant said that my Vit D was very low…i think he said 20 … what ever that means?!
In the last 18mths I have had three bouts of ‘This Thing’ where i have quite severe weakness and fatigue…cant lift my arms, am staggering around and cant control my balance, fall over, am clumsy, numb and or tingling feet and hands, muscle cramps or spasms, headaches, visual alterations, problems speaking… even having problems controlling my bladder and bowels…when i need to go I REALLY do, but also general constipation. When ‘This Thing’ hits I am really not myself I get very lethargic, it took about three weeks to recover from the first two bouts and then maybe not so long after the third…perhaps because I have learned a bit about self moderation.
The GP thought it was a muscle virus the first time round but has become more concerned after the repeats. In the midst of this it was discovered that I had nodules on my thyroid ; therefore the fatigue etc was attributed to this, and so I was put down the road of seeing the specialist in Endocrinology. That avenue was exhausted, the thyroid issue is benign.
I also have had a period of being an inpatient, about 7 yrs ago - I had a tight band of crushing pain around my chest. relieved a bit by morphine…after three days of repeated episodes in the hospital and many tests, there was no diagnosis, they said it was not cardiac origin…but offered no other explanation.
I dont want this to be all consuming, I want to be ME not MS…if that makes sense. I am at the stage that many will have gone through, studying and reading up – trying to understand, learning about lifestyle changes that may support me…and probably wont do me any harm anyway!!!
- A few days later…
Oh my…my brain is working overtime…I think I need to calm down to a riot.
I am sitting in Limbo land, reflecting on the conversation with the MS consultant earlier in the week…and as usual thinking damn ‘I forgot to say this …or that’
So I will tell you instead. I am thinking about autoimmune issues…
I have had viral meningitis three times, each time is was put down to a rhinovirus…ie a cold virus that has triggered off the meningitis. The consultants decided that it was my immune system that was attacking my brain. I didn’t get normal cold symptoms…it just went straight from that ‘just before a cold’ feeling to severe agonising headache extreme temperature and all the meningitis symptoms…(except the rash). In the last twenty years I can honestly say I have had no more than a dozen fully recognisable colds!! …I just get a headache which I have learned to recognise as an early symptom and then I just lie down for a full day…and wait for it to pass.
I have recently, 2 yrs ago, been diagnosed with a clotting disorder…my platelets don’t function properly…they are there…just not behaving themselves…there was a suggestion that this may be immune related but the experts don’t really know. I often get nose bleeds, and bruise very very easily… (this doesn’t bode well considering that I now keep fall down and battering into doors and furniture :-0 )
My daughter, who is now 27, had ITP (Idiopathic thrombocytopenic Purpura) when she was 18 mths old…this is an autoimmune issue where her body attacked and destroyed her platelets, causing severe risk of bleeding etc. we were told his was caused by a cold virus…Her immune system has always over reacted to viruses she gets extreme temperature responses to infections…giving her childhood febrile convulsions… Then when she was 17 she has the first two HPV vaccines and then ended up having a bizarre immune response. She developed Reactive Arthritis, and needed to have lots of fluid removed from her joints…it was so severe she couldn’t even move her hands to her face to take a drink. When she was in hospital this reaction also affected her heart - she was in tachycardia. and her CRP elevated to 240…indication a massive inflammatory response.
Unfortunately that then led on to FSGS (Focal segmental Glomerulosclerosis) about nine months later…again immune system was attacking the body, this time it was her kidneys…she now only has 25% kidney function…
Is there a pattern here? or am I making more of an issue than I need to?