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Any advice before another Neuro visit?

Hey everyone,

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 :frowning: 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.

Thanks :slight_smile:
Lynn

A decent reply is going to take more time than I have right now, so will reply in the morning - didn’t want you to think I was ignoring you!

Karen x

I am puzzled as to why the neuro won’t order a new brain scan given that it’s been more than a year since your last one and in that time you have had more relapses. I think that would be the focus of my meeting with him, if I were you.

As far as a letter goes, I think I would simply make a brief history for him instead. For example: (you’d have to fill in the bits I couldn’t)

06/09: Numbness of left side. MRI showed lesion at C3/4. Dx: CIS. Symptoms remitted in ??/??.

05/10: Numbness of right side. MRI no change. Dx: RRMS? Symptoms remitted in ??/??

11/10: VEPs and all rheumatology tests negative

??/11: Symptoms (numbness & weakness in left side, paresthesia in hands, bowel & bladder problems)? Symptoms x/y/z remitted in ??/?? Symptom x now ongoing.

??/11: Symptoms? Symptoms x/y/z remitted in ??/?? Symptom x still ongoing.

05/11: LP positive. Dx: recurrent myelitis.

Dissemination in time confirmed. LP positive for oligoclonal bands. Dissemination in space untested. Without a new MRI of my brain how can diagnosis of RRMS be ruled out?

I hope that makes sense!
My unqualified opinion is that you really need a new brain MRI. I wouldn’t press for the 3T scan unless a 1.5T scan comes back clear, or unless you know that your neuro can arrange it fairly easily - one step at a time might be easier. I say this because getting this neuro to send you for a scan will mean getting him to change his mind - not easy. Getting him to change his mind AND adding extra demands might be a step too far.

If he won’t send you for a scan, I think you are entitled to know why (in detail), and to ask for a second opinion.

I don’t believe your lack of diagnosis will have anything to do with the cost of meds. That’s a separate issue entirely. (It certainly should be anyway!)

I don’t know anything about the 6 month steroid treatment, sorry :frowning:

Hth. If I’ve missed anything, please ask!

Karen x

Thanks for that Karen, I really appreciate the time you’ve spent on this!

My own feeling is the same, that I really need to push for another scan but I think one of the reasons I’m so scared about Tuesday is that I’m going in trying to change a neurologist’s mind…not easy as you’ve said :frowning:

I’ll let you know how I get on.

Thanks again
Lynn
x