I’m new to the forum and this is my first post…as with all of you, I wish I wasn’t here!
I was diagnosed less than two weeks ago and have found the news hard to come to terms with. Basically, I had a few episodes of numbness over the last 4 or 5 years…numbness in fingertips at one point, then numb fingertips and toes for a week after my wedding (thought it was stress), another time brief numbness around the jaw (thought it was wisdom teeth). Each time they went away after a while. I got another episode around Christmas 2008 but I wasn’t stressed and couldn’t see a reason for it, so I consulted a GP. Got 3 MRIs, nerve tests, blood tests and then a lumbar puncture. The first MRI had been clear, the second there was a lesion around the neck; in the third MRI the neck lesion was gone but there were 2 in the brain: they were “atypical” of MS, I think because they were smaller than you would expect. It doesn’t seem that the neurologist thought it would be MS. However the lumbar puncture found the O bands / protein that resulted in me getting a “probable diagnosis” of MS - he said that it was a diagnosis, and the only way you’d say 100% is if you saw MRIs over the years with lesions getting worse.
At the moment I have numbness in two big toes, for a few months previously I had numbness in the middle finger of my right hand but I think that is fading. Previous to that, not long after the birth of my second child, I had pain when stretching or bending my leg / leaning on my shin in certain ways, then early this year I had pain in my middle right fingertip if I stretched my hand (that later changed to numbness). That was the first time I’d had pain as opposed to numbness.
Other than that, I am dropping things more often, I had been putting that down to tiredness with having young children (I have 2) and less sleep, but now I don’t know. And sometimes I am searching for a word but again I put that down to tiredness.
Anyway that’s the story in terms of symptoms and diagnosis. Thankfully the numbness hasn’t got in my way so far, and I had been hopeful that it was just something minor, I had looked up MS but saw it as a worst case scenario. When the neurologist told me the LP results he said “To my surprise we found the protein”.
As you can imagine I am horrified at the diagnosis and have been very upset thinking about what the future might hold for me (and my family). I have only told my husband and best friend as yet, so I am also having the difficulty of going on with normal life and pretending everything is fine, which is surreal and unpleasant.
So…to my questions…the neurologist told me that for “human reasons” he was not going to recommend that I start any medication yet. He felt that with my symptoms being mild, the possible side effects of medication and the lifestyle change in injecting etc outweighed the benefit from alleviation of symptoms. I specifically asked whether taking or not taking medication had any impact on the long term chance of disability and he said no. I asked if there was anything I could do in terms of diet etc but he said there are no proven links between supplements etc and just to have a healthy diet, exercise etc. Fairly vague.
I wanted to consult a private specialist (neurologist above is in the public system in Ireland) but it seems I may not be able to get an appointment before September. I wanted to ask the private specialist:
For a second opinion on the diagnosis - just in case
Whether it is correct that I shouldn’t be taking medication yet. I was given brochures after the diagnosis on the various symptom-alleviating medications (for future reference) and one of the booklets suggests that medication can help prevent or lessen symptoms which would prevent scarring / nerve damage which could be permanent. That would mean that the neurologist was wrong in saying that not taking medication had no bearing on the long term chance of disability: if my symptoms are causing nerve/myelin damage that might be irreversible then surely I should be taking medication?
I wanted to ask about having a third child. The public neurologist said there was no reason not to medically - but of course I am concerned about my ability to look after a baby and there is no way to know if or when my symptoms might worsen and impact my ability to look after my children. I wish I could get some indication of whether it would be a bad idea / irresponsible to go ahead.
I wanted to ask about dietary or other changes I could make to improve my long term chances of avoiding serious disability / alleviating symptoms. I googled it, which of course is not conclusive, and there are various suggestions from Vitamin D, cutting down saturated fat to increasing uric acid and other theories. I would like some advice on this, as I hate being told there’s almost nothing I can do, and just sitting and waiting to see if I become disabled or not!
I don’t know if anyone has any advice to give on the above questions, but any advice would be greatly appreciated.