Probable MS

[mc_smile]

Hi, all. I first saw a neuro in December after my family doctor ordered a brain MRI that showed some lesions and I had some ms-like symptoms, mostly balance and cognitive issues. My lumbar puncture in December was positive, with multiple bands or something like that. I've had muscle and joint pain for several years, but was told it was fibromyalgia and sero-negative RA. Around February, I started having the pins and needles, left leg only, and a couple of other ms-like things, like the one that makes you have the electric shock in your foot when you bend your head. Last weekend, both my forearms muscles started tightening and then releasing, then just hurt really bad and my legs did, too. Has anybody else had that happen? I'm late 40's and classified probable ms. My neuro wants to do a second lumbar puncture. Do you need to repeat those? Also, she gave me info on Gilenya, but I don't know whether to do that. Any advice would be appreciated, as I don't have anybody else I can talk to. Thanks.

[SNOOPY]

My neuro wants to do a second lumbar puncture. Do you need to repeat those?

You already had a positive Lumbar Puncture (LP) there is absolutely no reason to have another one. Even if it came up negative I would question why the LP needs to be repeated.

Did you have a MRI of your cervical spine (neck)? Having abnormal sensations when bending your head down is call LHermittes. LHermittes is not exclusive to MS but when related to MS is caused by lesion(s) on the cervical spine. The tightnening and releasing is Spasticity. There is no symptom that is exclusive to MS.

You would recieve more information about Gilenya and the other Disease Modifying Drugs (DMDs) on the medication forum. There is a forum that has just Gilenya information only.

[KoKo]

Hello mc

Welcome!

I agree with SNOOPY - if you have already had an LP, and it was positive for O-Bands - there's no good reason to have another one.

The only thing I can think of for a repeat spinal tap is if your spinal fluid also showed something else that was questionable or abnormal. Other conditions are ruled out with a spinal fluid analysis. But it sure seems like alot of time has passed (since last December) if there had been something abnormal or questionable found (other than the O-Bands).

Last weekend, both my forearms muscles started tightening and then releasing, then just hurt really bad and my legs did, too. Has anybody else had that happen?

What you describe sounds like muscle spasms, which are not uncommon for those of us with MS.

Sounds like your neuro is strongly suspecting MS, especially since Gilenya is being discussed.

Feel free to discuss your concerns here on the message boards. You can get good feedback and info about the various medications in the Medications forum, or from the National MS Society website:

http://www.nationalmssociety.org/abo...nts/index.aspx

Let us know what you find out at your appointment. If you have any questions, just ask and we'll be glad to help if we can.

Take care,
KoKo

[mc_smile]

Thank you so much. This is my first experience using Message Boards, so I don't know how to reply to each of you. I also saw an endocrinologist last week. Haven't had a followup with him, but my family doctor, who I saw Thursay for cholesteral results (245, but HDL is freakishly high, so no Lipitor for now), had already received report of some of the tests and said my TSH test was high and probably needed treatment. Family doctor recommends LP repeat. Evidently there was some question about the blood test which was positive, but they drew blood again a couple days later and it was negative that time. I am just so tired of seeing doctors and having tests and I worry about how I will be viewed at work and I can live with symptoms I have now that I really don't want to address anything. I am definitely not as bad off as practically anybody whose posts I've read.

[hunterd]

WELCOME!!!!!! just reply however you see fit, or just read the responses. i know if there is any question looming about your tests, they will repeat them. good luck.

dave

[mc_smile]

Thanks, all. This is a great resource. I wonder whether it is usual to start meds like Gilenya when you're probable ms. I also wonder whether there's a thread on low dose naltrexone therapy. I had a spinal MRI before any Lhermite (sp?) symptom. It was negative. About seven years ago, I had a herniated disc in my neck, but never had that symptom before. My neuro wants to repeat the spinal MRI, but I have already had two brain MRI's and one spinal. Both brain MRIs showed the same lesions. I only have three and multiple foci (which I don't know what that really is, only that it could be from migraines). I feel fortunate when I read so many other posts and see how bad some people's symptoms are. I saw an MS specialist a few months ago, with my neuro's blessing, who said it looked like early MS or benign MS. I really appreciate all of your comments.