I have been watching the forums for quite a few months now but like many others when I finally felt I could ‘join in’ there was a stop on new members :roll:
Anyway here I am at last! I’m 41, married with two girls (13 and 10) and I’ve been having symptoms for over two years now.
I have a bit of a story to tell before I get to asking for advice, so get yourself a wee cup of tea and a biscuit before you start reading
In June 2009 I was under a bit of stress doing a 3 month placement for my degree course which meant working full time, doing a 140mile daily round trip plus university work, children etc. and I lost feeling down my left hand side from the bra line down, it was sensory only and was as if a line was drawn down the centre of my body and everything to the left was numb (I’m sure loads of you know what I mean). Anyway I went straight to A&E thinking it could be a trapped nerve but knowing it probably wasn’t because I was in no pain and also my Dad has MS so I had an inkling straight away it could be something else. The doctor at A&E referred me immediatly to a neurologist and I can’t fault the NHS at all because I was seen by him the very next day!
He did all the usual tests and told me I needed an MRI. Result of MRI was one lesion at C3, brain clear, so he diagnosed Clinically Isolated Syndrome and discharged me telling me I had direct access to his service should I have any future problems. I recovered fairly quickly although had recurrent Lhermitte’s sign (which I then realised I’d had for quite a while before my episode) and this has remained still.
I had another episode the day after my final exam May 2010 and this time my right hand side was affected with the sensory problems but also my left foot was very weak and I couldn’t keep any shoes on unless they were strapped on (still the case now). I was seen by the neurologist very quickly and he told me at that time that it was RR MS and I needed a second MRI just to confirm. He actually wrote to my GP at this time and told him he had diagnosed RR MS.
So he was extremely surprised when the MRI came back with no change! He retracted the diagnosis and said that he now had to get other evidence to enable a diagnosis. In November 2010 I had VEP’s done. In December 2010 I had yet another episode and this time both legs were affected, my midriff (MS Hug type thing), bladder retention and I lost taste and sensation down one side of my tongue again as though a line was drawn down the centre (very weird!). In February 2011 I chased the results of the VEP and finally got a copy of the letter that had been sent to my GP which said that the results of the VEPs were normal and the conclusion was that I ‘strictly speaking, do not fufil criteria for MS. What she suffers from is an inflammation in the spinal cord with relapsing symptoms. The treatment of course is very similar in both conditions’
I then saw him in April and he told me that he still needed more evidence to diagnose MS, he referred me to Rheumatology to rule other conditions out and told me that I needed a Lumbar Puncture which I had been keen to avoid. He told me though that this would give him the evidence he needed and led me to believe it was of vital importance so I had this done in May. The procedure itself was fine actually but I was unlucky enough to lose my hearing for a few days and got the ‘headache from hell’ leaving me laid up in bed for ten days
I’ve spent the last three months waiting on the results and in the meantime I’ve had yet another episode which affected my hands and also bowel problems started (swing between constipation and urgency!). I’m much better now, but I’m not recovering completely from these attacks and every one is leaving a little bit more damage. My balance is shocking (orthotic insoles are helping this a bit), I can’t walk in a straight line and I’m also noticing cognitive stuff going on - more irritable, memory problems, problems with concentration when there’s a lot of background noise, trouble finding words etc. What a moan I am
And finally we get to the important bit! I saw the Neurologist a week past Tuesday and my husband and I went in expecting either a ‘negative’ result (ok where do we go from here) or a ‘positive’ result (MS diagnosed) because this is what he had led us to believe. Anyway I got a positive result but he still won’t diagnose MS because my brain is clear. He said I was a very unusual case and diagnosed ‘recurrent myelitis’ and wants me to start on Azathioprine and 6 months of low dose steroids. Well to say we were shell shocked is an understatement and we just kind of walked out without asking any questions but being told to google Recurrent Myelitis and Azathioprine and get back to them with my decision.
I spent a couple of days being very upset but then I started to get angry at the Neurologist because basically he was diagnosing exactly what he said in January. So why did he make me feel the LP was so important if it was going to make no difference to his diagnosis? I understand that there are criteria and I have read these but surely there must be room for discretion on the part of the Neurologist otherwise anyone could diagnose the disease based on tick boxes! I did google Recurrent Myelitis and didn’t really get anywhere because it’s always linked to MS and doesn’t seem to be a condition in it’s own right (it’s not Transverse Myelitis by the way). The cynical part of me wonders if it’s to do with budgets, Azathioprine costs about £100 per year, DMDs cost thousands. I called my GP and granted he isn’t an expert but he feels I’m being fobbed off with medical terminology so at least I’ve got his support. I’ve decided that I don’t want to start the Azathioprine for a few reasons - I want to work in a hospital using my degree which is not ideal with a depressed immune system, I think that I should have another MRI to check for any other lesions first and there are cancer related risks for long term treatment on this drug.
I spoke to my MS nurse and she said that she would get me back in to see the neurologist so that he can explain his decision and I can ask any questions I have. She also mentioned that I’m entitled to ask for a second opinion.
I’m going to try and research things a bit more before I see him but I was wondering if anyone else can offer any advice or thoughts on this situation?
Thanks for taking the time to read this essay by the way