Welcome to the board. I would be getting copies of all your MRIs and the reports and going for a second opinion. What happened to the spinal tap? Was it not successful at all? Did you tell the doctor of your L'hermittes? (that is the name for the electric shock when you bend your head down - chin towards chest) While you certainly might not have MS, in my opinion you have something to be concerned about. I would aggressively seek answers to your symptoms. Don't accept "you don't have MS". If that is what they are saying, then be sure they are giving you some other reasonable diagnosis. You have a lot going on and you deserve some answers there.
You might want to question your doctor about CIS (clinically isolated syndrome). It essentially means single lesion sclerosis. Some neurologists will agressively treat this in order to hold off MS. Other neuros take a "wait and watch" approach due to med side effects and the cost of treatments. I am sorry to hear that you had such a miserable time with that lumbar puncture. That would have been very helpful towards getting answers. I think they can do lumbar punctures using real time imaging that allows them to find a space and get that CSF. I will try and find some info on that.
Hi Mikaela, and welcome to the board.
I’m so sorry you’ve been really going through it. I wholeheartedly agree with Gretchen about getting a second opinion. If you can see an MS specialist, that might be particularly useful. You can get a list of local MS specialists by contacting the National MS Society.
Over the past few years I have had neuros go back and forth over whether I have CIS or MS, as I too only have one lesion that shows up on MRI, although I have additional issues and abnormal signs that lead them to believe I have other lesions. It is definitely frustrating and scary to be sick and not know for sure what is going on. Keep on searching, and feel free to post any questions you might have. This is a great place to come for information and support.
Here is some info on lumbar puncture with fluoroscopy...is this the one you meant Gretchen?
Hi again Mikaela,
I didn’t see your last post when I submitted my reply. With MS (and CIS), a lot of it has to do with location, location, location. I don’t know about your particular circumstances, of course, but one person may have many lesions and not have severe symptoms, and another person maybe only have a couple of lesions in critical locations, and be severely disabled.
Unfortunately, we just aren’t qualified to diagnose or say what is causing what on here. I’m sorry I don’t really have any concrete information to give you; I am just another patient myself. Also, this whole diagnostic journey is far from a black and white exact science in many circumstances, even for the neuros and radiologist who are experts in these things. As you stated in your original post, you have already had two differing opinions on your brain MRI, and that was from the experts. I do seem to recall that spinal lesions can cause L'hermittes and also probs with legs such as weakness and tingling, but I just don’t know. The fact that you have a possible lesion on your brain MRI could also be complicating matters further. I really hope you’ll be able to get that second opinion, so you can get some of this cleared up. Hang in there, okay?