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Multiple Sclerosis Message Board

Multiple Sclerosis Board Index

6 years ago I had brain MRI that showed I had extensive MS type demylianation across the top lobes of my brain. I have had vertigo and dizziness for years and ent Dr said the lesions were not in the right place to be cause of balance problems. Ihave severe spinal problem in neck and this was given as cause. It was recommended that I had urgent neurologist appt.

The neuro didn't even want to see me as he said the ent Dr had done a neuro exam that wasnormal and they do not diagnose ms on findings of scan and I would need to have two or three other significant problems such as opticalneuritis before I could be diagnosed. Which to me sounded like a maybe not sure.

I have endless attacks of neuro symptoms such as areas of extrememly sensitive prickly stabbingpains skin that last up to a week and occur anywhere on my body andcome in attacks that last for weeks then disappear for months. I also get weakness in a leg with muscle twitching and vibrating feeling again lasting weeks ormonths then going away.

I am now experiencing burning, pullling. poking prickly pain around waist down to navel moving around all the time. My spinal problems are always blamed.
Because this sensation is inbowel area if it doens't clear up I will be refereed for bowel tests! I seem to endure invasive negative tests over the yearswith no explanation.

Because I have never suffered any of the classic MS symptoms like optical neuritis or loss of function Drs tellme to not worry about scan result.

Any thoughts on if I should try and take this further??

A neck MRI showed no lesions I only have them across top of brain but I don't know what parts of body this part ofbrain effects??
Well, I just posted to someone who is frustrated about not being diagnosed with MS, to be careful of what you wish for. Not being diagnosed is frustrating. I have a lot of what look like MS lesions. I had a negative spinal tap. and eventually got Dxd with an adult leukodystrophy (unknown type). I spent the last three years undergoing testing with no Dx.
The second largest group of people who have brain myelin damages are the undiagnosed leukos. Unless you're interested in dying young or a wheelchair (actually both of those) you want to avoid us.
Be happy with where you are, because where you might end up is likely worse. Most often, in cases like yours, you eventually get your diagnosis of MS, and then get to inject yourself daily like the others, but at least, you'll have some peace of mind and a drug to help you.

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