New here and in limbo...I guess :)

[jess123]

Hi everyone,

I have posted here before but I did not introduce myself. I had an appointment with my MS specialist and he is very confused. I was wondering if anyone has had any similar experiences.

This all started in 2006 while I was in my Last trimester with my daughter.

Over the course of about four weeks I lost complete vision in my right eye followed by numbness and tingling that started in the bottoms of my feet and got so bad that I lost the ability to walk or even hold a glass. I did not want steroids because I was pregnant and everything resolved completely on its own.

now six years later I am having weird symptoms. My legs are very weak, pins and needles and the worst part is muscle spasms everywhere but mostly in my legs that leave golf ball size bruises on my legs.

So back for testing I went... My MRI is normal now but My old MRI showed one lesion in my upper spine, My brain MRI was always normal which my doctor found to be strange because they did find that I had optic neuritis in 2006.

My evoked potential showed abnormalities in the lower extremities. This is why the doc is confused he doesn't want to rule out MS just yet and now wants a spinal tap done ( I am terrified about this)

At this point I am so confused and I don't want to waste their time if this is not MS.

So I guess I am just looking for some advise/experiences for the wonderful people on this forum.

[JerryD]

There are so many tests to do, other than an LP. If you have been dealing with these symptoms for some years, what have you been doing as far as treatment ? Your doctor should have tested your vitamin D and B-12 levels and got those levels to their maximums. You could have some issues with hormones. I think you should address all of the non-invasive modes of testing before doing an LP. But I am not a doctor. This is IMHO. Good luck

[22cyclist]

Go for the LP. It is not much different from an epidural, and is not as scary as you think. I have had several, or did when I was being diagnosed many years ago, and have had some for studies.

Sometimes I did get a spinal headache, but that was all in the technique of the doctor doing it, and me in what i did afterward. Probably more the latter. If you follow the instructions and stay flat for 24 hours then you should be OK. No up and down, try to keep bathroom breaks to a minimum.

Drink some caffeine. Just give the hole a chance to seal. If you feel a headache coming on when you get up, lie back down for another 24 hours. The hole will seal on its on in about a week regardless of what you do if you are still on your back and not moving around.

I did need a blood patch once because I again didn't follow instructions and I was up and around even when I still had a headache.

You will get instructions, just follow them.

I am not saying the procedure doesn't carry risks, but it is better to have the results as a piece of the puzzle in the end than to drag it out longer.

[jess123]

thank you

Thank you for your advice guys, I really do appreciate talking with people who have been through this before.

JerryD- I did forget to mention that I had a lot of blood work done and my GP says everything is normal with respect to deficiencies. I also had blood work done for Lupus and NMO as that is what the specialist had originally thought I had, but I never thought of hormones and my doctor hasn't tested them at least I don't think so. I'm going to ask him about that.

22Clyclist- I am going to do the LP in the next few months, because I just want to know what is going on with me one way or the other. generally I am a healthy person, I have only had sinus infections and nothing else major not even a broken bone. Thank for your tips on the procedure it's really helpful.

I did have another question in regards to muscle spasm/twitching...I don't know what the terms are some are painful but most don't hurt just annoying. Does anyone know of any other conditions that could cause daily spasms?

Thanks again for you replies.
Jess

[hunterd]

WELCOME JESS123!!!! Great to have you here, but I am sorry why. I also confuse my Dr. I am diabetic, and the lesions that show up on MRI, he thought were related to the diabetes (I wish they were). My" escapades" lasted for seven years before I was finally diagnosed. It was the LP that finally confirmed MS, so I urge you to have it done. Good luck to you! Keep us up to date.