Hi everyone... I'm new to this community and I don't know who else to ask for help but you all who might know what I'm dealing with and might have some suggestions for me.
On May 23, 2016 I woke up feeling off. I was dizzy, disoriented, and very tired. I chalked it up to a bad night of sleep.
My symptoms have yet to go away. I have had a lot of medical testing. No lesions have been found in my brain or my spinal cord, but my lumbar puncture was indicative of MS with a very high level of IGG and oligoclonal bands. In the past few weeks I have been getting more and more symptoms. I have a strange electrical sensation in the back of my neck. My feet twitch uncontrollably at night. Occasionally it feels as though the back of my thigh is asleep. My fatigue keeps me from doing a lot. I forget words, I forget the names of people I have known for years.
I am seeing a third neurologist in January as neither of the first two are willing to do anything for me. I am just not sure what to do at this point and any advice or any knowledge that anyone has would be immensely appreciated.
Hi Chris, getting a third opinion is a good idea, and if that gives you no resolve contact the ms society and ask for a referral or go to your gp and ask for something to relieve the spasms. In the meantime the best thing you can do is relax, relaxation exercises are good. Learning to be calm is important, the more the muscles are stressed the more they will revolt. Living with ms is learning to calm ourselves, to relax and quiet the mind into a peaceful state no matter what is going on, or else all the muscles will jerk us around like puppets. Remember, the mind controls the body and we control the mind, keeping it peaceful calm and quiet will save much aggrivation.
I am hoping you still check this site. I have had the symptoms for about 5 weeks now. MRI's came back no lesions and I am wondering if I need to do a lumbar puncture as well. I have felt very strange the past 5 weeks-left side body tingling, tingling on face, scalp, slight burning sensations left hamstring, glute. The dizziness and cloudiness have been very strange too.
I know your message was in 2016, what has happened since then? Please let me know.
I've been dealing with having no diagnosis since March of 2018... Sometimes I get home from work around 6 and I'll do this or that and be in bed by 8 and sleep till the next morning. Partly from fatigue and partly from depression.
I've been to a Rheumatologist and Neurologist and I would like a muscle biopsy of either thigh muscle or calf muscle and a lumbar puncture. But so far nobody wants to do that as all my test results come back normal except a Sed Rate of 30 when normally it's 5. MRI of brain and spine showed no lesions with or without contrast.
It's very frustrating to get no answers and after a while I had to stop with all the doctors appointments as I was missing work to accomodate. So now I wait a little while and get back into again...
There is something called HTLV I HAM/TSP and I worry about that, but I had 3 tests including a PCR test which looks for the actual virus or viral proteins. Just a week ago I told a Professor this online and he said, well you might have a gene deleted version of the virus which may not show up on an antibody test or PCR test. I emailed 6 doctors and asked so what test should I have then? Only 1 reply and they just said well if those other tests are negative then you should be fine... but I'm not fine... legs are just getting worse.
I am scheduled to go back to my Rheumatologist, but would like to schedule with a Neuro Muscular doctor and not just a Neurologist and see what they say... nobody wants to seem to do a lumbar puncture though... at least not yet.
I feel your pain, sorry you are going through this.