I’ve got another neuro appointment next Tuesday and I’m getting really worked up about it. I want to write a letter to him telling him what I think/feel and listing my concerns and I plan to take it with me (keeping a copy for myself) but I was looking for some inspiration as to what to say :?
I posted on here a while ago going through everything that’s happened but it was just after the new site was up and running so I’ve lost it and any replies The only reply I remember was from Karen saying to me to get a 3T scan which I’m going to mention.
I hope it’s ok with you that I go through it again and see what your opinions are (sorry if you read all this before).
I was diagnosed with Clinically Isolated Syndrome in June 2009, following numbness down my left side and an MRI which confirmed a lesion on my spine at C3/4. I was fine for nearly a year then in May 2010 I had another episode, this time numbness down right side. My neuro told me it was RRMS and that he needed another MRI to tick the ‘dissemination in space’ box. He was very surprised when the MRI came back exactly the same as before and said that he would now need to look for other supporting evidence and rule other things out. But he still wrote to my GP in the August giving the results of the MRI and saying ‘Based on the history, it appears that Lynn probably has suffered a further relapse with sensory symptoms changing the diagnosis to relapsing remitting multiple sclerosis. This change is not reflected in the unchanged MRI brain and cervical spine’
I had Visual Evoked Potentials done in November 2010 which came back normal. I had a whole battery of blood tests done and was referred to Rheumatology, all came back normal. He then told me that to get the evidence for MS he needed me to get an LP done, which I did in May this year.
In the past year I’ve had another two relapses which have left a permanent weakness and numbness in my left side, pins and needles in my hands and problems with my bowels/bladder.
I went to the neuro in August to get the results of the LP and went in expecting either a negative (ok what do we do now?) or a positive (confirmation of MS). What I was told though was that although the result was positive he was not diagnosing MS because I had nothing in my brain (at this point it had been 14months since my last MRI), he diagnosed Recurrent Myelitis and said that he wanted me to start a 6 months steroid course and start taking Azathioprine (Out of favour MS treatment which is now normally only used when the DMDs aren’t tolerated). Both my husband and I were a bit shell shocked and basically left without saying much! I was told to Google Recurrent Myelitis to find out a bit more about it (to be fair the MS nurse knew I was someone who would do this anyway!).
I appreciate that under the current guidelines I don’t tick all the boxes yet, but under the previous Poser criteria I would have been diagnosed with Laboratory Supported Definite MS so I’m a bit confused as to why they can’t diagnose based on experience rather than tick boxes? I did google Recurrent Myelitis and it doesn’t seem to exist as a condition in it’s own right (it’s not Transverse Myelitis), it’s always linked to MS or NMO, so I feel like I’m still in limbo. My GP thinks I’m being fobbed off and wanted me to see the neuro again to get further explanation before asking for a second opinion. I wonder if it’s anything to do with the cost of DMDs and the fact that I’m not a clear cut case?
I can’t fault the lengths that my neuro has gone to to get a diagnosis but I feel confused and let down now because there was no mention of more scans or investigations. Any future relapses could still be put down to one lesion unless it’s something above my chin level so how will they know if things are developing? I’m also worried because it was obviously bad enough for him to offer me Azathioprine but I don’t really want to take that.
Thanks for taking the time to read all of that and would love to hear anyone’s opinion and thoughts on what to say to him.
Oh by the way my Dad has MS too.