Hi folks, a great big hello from me, and thanks for letting me join. At the moment I am in limbo, and not sure what is going on with me. I am 60 year old male, in relatively good health May 2017 Out of the blue my vision just started to jump up and down in one eye, lasted for 1 week. Went to see gp sent me for MRI, the next day, waited ages for results only to be told, we think you had a stroke! TIA several months later was told by same Neuro, after accessing your condition we now conclude you haven’t had a stroke, but we now think you have inflamation of central nervous system instead. Sent me for another MRI and after long wait told yes you definitely haven’t had stroke but we want you to have a lumbar puncture. Went November 2018 for lumbar punture, waited ages for results to be told you have identical obliclonal bands in CNS and Serum. Few months later referred to a senior MS specialist lucky for me at a centre of excellence in Stoke. For last 2 years had blood tests for antibody tests, several more MRI scans, some with dye injection. So where am I now, well still no wiser, for 2 years now my MS specialist keeps saying "I think you have possible M.S. but a very mild version which may not do anything for 20 years! He says just because you have identical obliclonal bands in CNS and Serum, does not necessarily mean you have M.S. When I visit him which has been 3 times now over last 2 years, he performs the same tests, such as reflexes, walking heel to toe across floor, touch test nose to finger. All these tests I carry out with no difficulty. All my MRI scans have shown no new activity. I have been left with permanent damage to my vision as result of my initial problem, its called internuclear opthalmoplegia. Only other symptoms I suppose are slight numbness from knee to foot in both legs What really concerns me is, if I have inflamation of Central nervous system, this Surely isn’t good for my long term health, or is it another symptom of MS? That an MS sufferer has to deal with. So I feel very much in no man’s land at moment. Hope someone may be able to throw some light on my situation please. Thanks Steve
Hi Steve and welcome to the club no-one wants to join!
I spent a lot of years in limbo…in and out of probable PPMS, wrongly diagnosed with HSP (similar symptoms but very different disease to MS) and then finally got a definitive diagnosis of Spinal PPMS, 22 years from onset of symptoms.
Those symptoms were foot drop, fatigue, bowel/bladder accidents, stiffness and spasms in all limbs.
My 3 LPs and 4 MRIs showed no proof of anything. It was the 5th MRI that showed cervical and thoracic demylinating lesions, typical in MS.
Im afraid I dont understand much about findings on LPs, apart from knowing the words oligoclonal bands`!
As far as I know (but am not sure) inflammation of the CNS and MS are 2 different conditions.
Sorry I can`t be more helpful.
Boudsx
Hi Bouds, Many thanks for your kind reply, It sounds like you have really been through the mill, it must have been a very difficult time for you. I think the problem with this MS and our over stretched health service, information is so hard to get. Thanks for your help Steve
Neurologists often use the term brain or cns inflammation when they are not quite ready to commit to a firm diagnosis. MS is the most common inflammatory disease of the nervous system, but there are other diseases that cause neuroinflammation too.
Chronic cns inflammation is not good for your health, that is for sure. Protocols, such as Dr Wahls diet, and MS Hope diet use a lot of plants and supplements high in antioxidants that help fight inflammation, and do seem to help some people. Also linked fairly recently with MS is mitochondrial dysfunction which causes inflammation. Mitochondrial dysfunction inflammation can apparently be reversed (I don’t know if this is partially or fully reversible). Certain vegetables, fruits, herbs and supplements will help support mitochondrial function, and reduce inflammation.
Knowing that inflammation might be involved even if you don’t have a definite diagnosis, does mean that there are some quite simple, safe things that may be worth trying to reduce inflammation whilst you are waiting for a diagnosis. Vitamin D, for example, helps reduce neuroinflammation, and you’ll find many with MS use it. Certainly anyone with vitamin D deficiency should get their levels up into the optimum level range.
Unfortunately most neurologists won’t tell you about this whilst you wait in limbo. Under a little pressure they might mention vitamin D …
I guess the question to ask your neurologist is ‘if there is inflammation in my central nervous system, what can I do to reduce the inflammation?’
Be interesting to see how different neurologists will respond to that question.
If you ask them what they can do about it, they’ll probably mention steroids, but they’ll usually only use them in an acute flare-up as steroids are effectively a big gun approach with lots of colateral damage, whereas what is needed is gentle targetting over a long time with minimal colateral damage.
Thanks Ziola