MS? Nothing? How long do I wait?

[Bandy7413]

I am a 23 Yo female of Northern European descent. I was actually born in Europe. I was medically evacuated from Afghanistan because I had minor headaches but when I went to get something for the headache my doctor noticed some unusual symptoms. My doctor noticed that as I was sitting there my right pupil was dilating and became much larger than my left. When he did some basic eye tests he noticed that I had convergence insufficiency and couldn't keep my right eye focused when his finger was brought in close to my nose. I also get double vision when looking at things that are smaller and looking at them up close such as my phone charger and pens and such. I had an MRI in Germany and they found 3 white spots they called "demyelination" that are too big to be migraines, which is what they originally thought was my issue. I had a LP and all they found was 1 Oligoclonal band which the Neurologist said he is unsure of its significance just yet. I was put on Topamax and am currently on 100mg daily. I have always had some symptoms but these symptoms have become more frequent and I would like to discuss them. I haven't really discussed them with a doctor because I don't want them to say "oh you are fine you don't have anything, I don't know why you have these symptoms" and then think I'm crazy. I have random small area spasm, such as in my thigh and you can see them, then in the sides of my feet and in my hand right below my thumbs.. my left eyelid does it alot. My right index finger has tapped a few times for about 2-3 minutes and I can't control it. I have a horrible train of thought, horrible memory, I get random sharp pains mostly in my arms that shoot from my mid fore arms down to the sides of my hands. These pains are in episodes of 2-3 times 1/2 a week..the shooting lasts 5-10 minutes and drives me crazy, sometimes i cry. Its not extremely painful but its painful enough and I'm scared it wont go away. The oddest thing that has happened, actually happened this morning while I was half awake. I was waking up and I got this sharp zap  in my left heel and my foot started twitching and kicking and first thought was "woah I have to tell the doctor." Then I fell back asleep. I fell like these are all happening maybe because of the meds, but these happened before the meds but more now since the meds. I know this is long winded and uneducated. I am an RN and a Medic in the Army but I have been at Walter Reed a month and have only seen one doctor and waiting for any answers and sitting starting at walls for a month with no answers. Any insight would help, thank you.

[HVAC]

It sounds frustrating.I know you just want them to find out what is going on. It sounds like something Neurological. It took me years for them to figure out my Neurological Problems were MS. I can relate to some of your symptoms. I have no clue if you have MS not being a Doctor.

Alex

[Bandy7413]

So the newest doctor said that my monoclonal band isn't normal for ms so we are looking more towards lupus..do my symptoms match lupus?

[supermum_ms]

Hi and welcome to our little MS community,

After reading your original post, I would be concerned with any neurologist who is willing to ignore Clinical signs and MRI evidence of dymelination, simply because you don't have 2+ Obands. It would be in your best interest to get a second opinion, preferably with a neurologist who specialises in MS.

I'm not sure why Lupus would be the alternate dx, if your MRI is showing dymelinating lesions, Lupus can be difficult to dx but generally it's dx based on positive blood tests and type of sx's eg butterfly face rash etc. There has been a little research on Lupus causing brain lesion but it's suppose to be extremely rare and that still wouldn't explain your dymelinating lesions, so i would think it's unlikely to be Lupus.

Cheers............JJ  

[Guitar_grrrl]

Can you get a second opinion outside of the VA?  I know this involves extra $$$, but the VA has been known to drag their feet on diagnosing neurological signs and symptoms.  Just a thought.

[PeninaD]

Lupus is diagnosed by blood tests, so what blood work was done to prove or disprove the Lupus???
As an ex-Navy wife, I can tell you that the workup you get is not going to be very good, especially if it is not combat injury related.  Trauma, they are good at...medical, not good at all.