Hi, I have been having some odd neuro type symptoms including muscle weakness, twitches, and double vision since 2010, but had given up on a diagnosis. However in Dec 13 I had suspected ON, followed by L’Hermittes and more problems with the muscles in my left leg/arm which lead to a new neuro referral. Saw neuro in March, who sent me for an MRI and VEPs. Apparently the VEPs came back negative, and the MRI showed clear brain, and several lesions on my posterior cervical spine at C5/C6. I have no idea what these lesions mean, because I ahvent had a follow up appointment yet. I received a letter saying that the findings were abnormal and they were sending me for repeat VEP, and also taking my case to the multi disciplinary team meeting to discuss with the neuro inflammatory specialists. It also said I may be asked to have blood tests and/or lumbar puncture and they will let me know. I had my repeat VEP last week, and there was some confusion because I had been sent the wrong letter, so she showed me the notes she had been given, which said lesions cervical spine - suspect demyelination. Today though, I went to the GP with another bout of vertigo type dizziness, and she told me they had a letter confirming hyperintensities in my cspine but saying it was NOT demyelination. I thought that all lesions (or t2 hyperintensities) were demyelination. If it’s not demyelination why are they discussing it with the neuro inflammation docs? What is inflammation as opposed to demyelination? So I am really confused. I have been having these symptoms for 5 years now, and have been living with the shadow of MS for 9 months. Just wondering if anyone can shed some light on it for me, since the GPs don’t seem able/willing to comment, and the hospital seems to be in a bit of a pickle and buckling under the strain at the moment, so no f/up appointment and therefore no info. (That slid into a rant didn’t it? Sorry :-D) Thanks so much Leah
Ps sorry for the lack of paragraphs, my original post was beautifully laid out
Demyelinisation is like the insulation on an electric cable starting to get old, break up, and fall off. Data going along the affected neve fibre can potentially leak out.
Inflammation inside the spine is just like anywhere else - some tissue swells up. This presses on the nerve fibres and restricts the flow of data up and down.
Why all the tests? Well, most MS diagnosis is done on the basis of eliminating things - sort of “test X” rules out “possibility x”, sort of thing. It is usually possible to Dx spinal inflammation, on it’s own, by physical examination. But, when the patient has more than one obvious symptom, then a full Dx gets a whole lot harder.
Hope this helps
Thanks Geoff, it does help. It sounds like my “spots” are not inflammation then, because they were on the MRI despite the symptoms having subsided a month or two before…
I do try to be a patient patient but sometimes it’s not easy…