I am kind of in limbo land still (2 years of symptoms), getting IVIG for this mystery illness. and it helps greatly.. however I have A LOT of MS symptoms.. I feel like I have water droplets on my limbs.. i feel like my foot is in a hot water bucket.. The opthamologist says I have had optic neuritis in the past.. I have muscle weakness, brisk reflexes etc.. I also have numb tongue at time that is accompanied by slurred speech - i hate that symptom!!! it can be numb all the way back to my uvula!
Anyhow, since I have had symptoms, if I touch my arm deeply, or hit it on something.. i get zingers (don't know what else to call it).. all the way distally down and it can keep zinging for a while afterwards.. Like hitting your funny bone, though it happens whereever i hit my limbs..
I also think I had an MS like hug when symptoms started-- i was at work and it was so strange.. my torso became so tight , it really caught me off gaurd.. it happened about five times at the onset, havne't felt it since..
I had one lesion on my brain MRI and one on my c spine.. first LP was normal, second had a lot of MS markers (no 0 bands though )... however at the time I had meningitis from the IVIG.. so I don't know if that gave the tests false positives??
First I just want to say Welcome! Secondly, I want to apologize for the slow response to your post.. A lot of people are celebrating the holiday. Things should get back to normal in a few days...
A lot of what you say sounds familiar, but not all of it. I don't know much about meningitis (except I'm glad you survived it!), or IVIG. MS is a slow disease, so if you have it, there is time to let the doctors figure it out. Just don't give up. I hope this turns out to be something else, - but please feel welcome to stick around. Under normal (non- holiday) conditions, this is a very well supported community. Have you had a chance to look over the health pages? (On this page, last column, about halfway down.) There is a lot of very helpful information there.
Hi there, its been a long time since your last visit, i read back through your posts and gosh you've got a couple of hickups that have probably made it more difficult to work out your dx (menangitus, scoliosis etc) though honestly that spinal lesion should be the big clue because there arn't many conditions that cause them. MS is one condition but off the top of my head the size of spinal lesions seen in MS are usually small and a large lesion is more usual in Transvere Myelitis (sp).
I actually think i know the feeling your talking about, i sometimes get the 'after' banging your funny bone zing feeling in my left arm, though i havn't done anything to the arm and it doesn't stop like its suppose to, if it was just an elbow bump, mine when it comes simply lasts for days on end.
I noticed you said something about not being able to have 3T spinal MRI's because of the surgeries (fushion?) you've had for the scoliosis, i'm not sure i understand why the lower T would be ok and the 3T not but anyway, what we know is that spinal lesions are more difficult to detect in the lower strength MRI's. If they found one on a lower MRI, its highly possilbe that you have more than the one.
Um i'll be the first to admit I dont understand as much as i'd like about LP results but i really thought that 0bands was the only MS marker so i'm really not sure i get what you mean by "had a lot of MS markers (no 0 bands though )... " though I actually think the dx ON and test results from that is going to be more important and less problematic in the grand scheme of things.
i'm probably over my limit of text charactors so i'll end it here, but i just wanted to add that if you are still seeing the same neuro all this time, i think it may help to get a second opinion preferably with an MS specialist.
THank yall so very much for your responses!!! I really appreciate them!!!
They told me that the I could have the T3 MRI as far as safety goes with my back, but theys aid that it would be too much artifact from the rods, that it would make it harder for them to interpret : (
I have all sorts of weird symptoms. who knows.. but it would be great to find out if there may be a better treatment out there than what I am currently on (the ivig)
JJ - i will have to look at my med records when I get home (i'm getting IVIG right now).. and see what the other markers were. .. they were things I had never heard of.. my first LP (when I didn't have meningitis).. was normal.. My VEP's were apparently borderline.... I have seen like 7 neuros- more if you count when I was admitted!! None of them MS specialists though.. I am currently at a university neuromusclar center.. just had another emg/ncv (my fourth one in 2 years.. but my 1st one in a year).. and it was stone cold normal, which makes me wonder more about the MS thing. .. ?? I was post partum and at that "right" age for it to hit me.. so a lot of the dr's thought i would end up with an MS diagnosis.. however 2 of 3 brain MRI scans have been "normal"
I meant to also add... I seem to have urinary retention as well, I had a little incontinence (only 3 times) right before I got hospitalized, every time it was within 15 minutes of going to the bathroom.. I just coudln't full empty.. and the retention is there more often than not. .. add that to my long list of weird symptoms!! :-0
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