Symptoms continue to worsen and NO answers

[mktaylor10]

Hello - I hope someone can help me. I have had severe tingling, in my feet (feels like a stabbing and numbing pain) and it feels like I have a constant charlie horse in the arch of my right foot. I am extremely tired in the afternoon and when I walk or exercise I have stiffness weakness and dizziness. My symptoms have presented like MS and I have had more blood work then I can think of, I have had a Brain CT, 2 MRI's, 2 EMG's and an EEG in the last month and my testing comes back normal. I have now had increased dizziness and vertigo and I have nausea that I don't know is a stomach flu or related. Sometimes I can't drive because the dizziness is overwhelming. I have had pain sometimes severe but subsides and I am very tired. My neurologist seems to have given up since everything is normal on the scans. It is frustrating I don't feel any better and I still have burning, tingling and clear weakness on my right side. I went to the ER for the dizziness and vertigo and they came me mecalizzine. The vertigo is crazy. I don't have ear problems that I know of, and I am getting frustrated as I have felt awful for three months, with no answers.

Any suggestions? I wonder if I have CIS (clinically isolated syndrome), I still have these symptoms and I am at my wits end.

They have run lyme disease testing, lupus and I want to go to a larger Neurologist at a University hospital setting but not sure what to look for..
Help...

[supermum_ms]

Hi and welcome,

You haven't mention if you had any corroborating abnormal neurological results show up in your neurological exam but generally if all of the MS related tests including the neurological exam have been normal, there wouldn't be anything to suggest the causation 'could be' a neurological condition like MS.

There are numerous 'symptoms' associated with MS but they are also associated with many other conditions too, what you've mentioned would not (on there own) be particularly suggestive of neurological causation, so CIS generally wouldn't be on your list of possible causes either.

I would suggest you consider getting the vestibular disorder possibility checked out (vertigo) because if there is an inner ear issues, it may lead to some potential causes ie post viral etc. Another thought would be a structural spinal issue, bilateral peripheral paresthesias are not actually common in MS presentations though it can happen. MS spinal lesions are usually small and don't cut off the cord and more typically cause unilateral issues, so with your bilateral presentation, plus the vertigo it could be related to something spinal....sorry that's all i can come up with.

Cheers.......JJ

[Jjewelz1987]

Hi there. Sorry you are suffering.  I read over your symptoms and see that you have also been tested for Lyme disease.  Speaking from personal experience,  I would like to inform you that  Lyme disease testing is extremely inaccurate! The testing for it is only accurate 50 percent of the time. That means that 50 percent of people who have Lyme disease will test negative for it! I think you need to seriously keep that in mind that all your symptoms could really be caused by undetected Lyme disease.  I had undetected Lyme disease and I had almost all the symptoms you have. I think one of the best things you can do is post on the Lyme Disease section of MedHelp. There are very helpful people in that section that can help you further. Lyme disease requires special doctors called LLMDs to treat it, they can help you find one on that section.

[Sandy5479]

First thought on leg and foot cramping-eat a bannana. Those are common for potassium deficiency.

Other symptoms could mirror that of GMO food toxicity.

[mktaylor10]

Forgot to also mention I have had tremors and I am unsteady on my feet at times when walking, especially on the right side.