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I have twitching in different parts of my body at times, but mainly in my calves of my legs including cramps at times. The neurologist ordered an MRI of my brain stem and did find lesions on the myelin sheaths. I also got an MRI of my lumbar area and it showed nothing unusual.

He has asked me numerous questions which woudl point to why I may have those lesions on my myelin sheaths but nothing is relevant.

I'm torn between continuing with more MRI's. It almost seems 'silly' to continue with them because all I have is some twitching, but he says it could be MS.

What should I do?

Peaches, it's hard to say what you should do. It depends if you're the kind of "go with the flow" person who can live with unexplained symptoms or if you're the type that cannot rest until you know more. I was the latter and I had all the tests they could give me and I still had to wait 2 years until I had another relapse. MS is very hard to diagnose as I'm sure many on this board would tell you. If he wants to send you for more tests, he probably does suspect something. It's really up to you if you feel that you need to know or would rather wait to see what happens. Good luck.

I am not sure...really would like to know just becasue I guess. But don't want to tax the insurance company with unneeded tests either.

Tell me.... does neck/shoulder pain radiating down my arm having anything to do with MS? I have so much shoulder / arm pain. It seems to flare up. My right shoulder got 'frozen' a few years ago...now the right one is flaring up also. Going to a chiropractor for electronic muscle stimulation and ultrasound. Don't know if he has anything to do with my twtiching or not.

Peaches, I agree with scoobyjude. In addition, I know that lesions seen on MRI are used to diagnose MS, but I am not sure that I believe there is any correlation between lesions and MS symptoms. Many people with MS symptoms have no lesions (especially early on in the disease course).

If you can go on with your life without a definite label or diagnosis on these symptoms, I encourage you to get on with your life -- enjoy every day and every opportunity, and eat a healthy diet (low carb), too -- it wouldn't hurt.

So many other conditions - even transient infections - can cause lesions. Migraines can.
Coeliac disease can.
They're just 2 I know of, I'm sure there are more out there.

Yes, the doc asked me alot of questions...did I ever have this and did I ever have that, etc. but the answers were always no. Thanks for the info.

peaches wrote:Yes, the doc asked me alot of questions...did I ever have this and did I ever have that, etc. but the answers were always no. Thanks for the info.

My personal preference is to track down anything I would actually want to treat. So when my neuro stuff started, very important to me to rule out disc problems, spinal cancer, vitamin deficiency, lyme disease, etc etc. All stuff that could be causing the symptoms, and if so, I could and would do something about it.

Once we got down to where all that were left were diagnoses for which I wasn't interested in treatment at this time, I let it go. Figured that time would tell if there was anything else I needed to know.

***

Everyone's got their own comfort level. Be in charge of your care, and manage it the way *you* like to do things.

Jen.

Thanks so much for your input.

I did go back on Friday and we talked again. We pretty much decided to just drop any more testing for now UNLESS new symptoms popup. Then in 1 year go back and geta repeat on my brain to see if any new lesions have appeared...then we woudl have a pretty good idea that this is MS.

What is your story? Do you have those lesions? Wht are your symptoms?

The doc told me i COULD have a Benign form of MS where I will have very few symptoms. It's odd because I'm in my mid 50's and usually he says MS occurs at 20's and 30's. Although he did say that if I have this benign MS, I could have had it a long time and never new it. he also said that it's possible that the twitching I'm having could have nothign to do with the lesions or ms...

Very interesting diagnosis journey....

lyndacarol wrote:Peaches, I agree with scoobyjude. In addition, I know that lesions seen on MRI are used to diagnose MS, but I am not sure that I believe there is any correlation between lesions and MS symptoms. Many people with MS symptoms have no lesions (especially early on in the disease course).

If you can go on with your life without a definite label or diagnosis on these symptoms, I encourage you to get on with your life -- enjoy every day and every opportunity, and eat a healthy diet (low carb), too -- it wouldn't hurt.

Oh yes, this doesn't get me down what-so-ever...it's just puzzling and very intriguing actually.

Isn't the body amazing?