Any suggestions Appreciated

[atino]

Hello. I am a 40 year old with many symptoms of MS. This all started about 41/2 years ago when I had tingling and numbness in my face. The numbness went away in 24 hours but I had periodical tingling for months. I went on with life and about 1 year ago I started to feel as if I could not swallow. I lost 50 lbs and thought I was dying. We never did find a diagnosis but things when back to normal when I became pregnant. About 3 months ago I started with tingling and weakness on the left side of my body and I was tripping over nothing. 3 weeks ago, I got up from the computer and could not move my left leg. The ER doctor said I was having an “acute exacerbation of MS” I have followed up with a neurologist and had a negative brain MRI and a negative Visual evoked potential. The neurologist did not order any further testing and I still can not use my left leg and my left hand and arm are becoming weaker.  The neurologist did say that I have hyperactive reflexes and loss of balance. The ER doctor also noted that I had a decrease in my peripheral vision of my left eye. The other symptoms I am having are;

Tingling in left side of body
Dizziness
Weakness on left side of body
Fatigue
Loss of balance and coordination

I currently use a walker to get around and at my wits end. Should I seek out another doctor that specializes in MS or go another route. I am very worried about the hyperactive reflexes because research says that they are usually a sign of neurological problems. Any suggestions would be appreciated.

Annette

[atino]

Thanks for the advice. I had a appointment with my GP and she has referred me to the Cleveland clinic. I am happy to finally be able to see someone that specializes in MS. I am waiting for the insurance company to Ok the referral but I am optimistic that they will. I am very worried about what is going on but once I find out a diagnosis ( if it is not MS that is good but what is it) I will feel better and we can atleast start some treatment.
Thanks for the advice.
Annette

[tesa26]

hi atino!
My advice to you is find another dr. My Fiance has MS and I can concur with the fact that all of they sypmtoms that you just named are signs of MS. (not saying that it couldnt be anything else but it sounds like it to me, not sure I am not a Dr only know through experiance. You need to find a Dr that specializes in MS and I hate to tell you this but the most accurate test to determine MS is a spinal tap. They look for calcium build up in the spine and thats normally the do or die to that situation. I would not waste anytime either because if you are using a walker to get around on a regular basis you could already be in the progressive state. Good Luck, Hope this helps

[Fionajnz]

I am sorry you are feeling so unwell and frustrated by lack of dx.

I know how difficult this can be with a young family and mobilizing on a walker.  I was severely unwell after having our third child 2.5yrs ago and did the wheelchair and walker route for close to 6 mths..  

The good thing is that your tests to date have been negative from a neuro standpoint, that bad news is that the testing is negative, because you have no direct answers regarding what is happening to you.

My best suggestion is to get a second opinion from the best specialists you can find on your plan (in-network first, as it costs much less usually and health insurers will usually do this). For a while I felt like I lived in Drs offices, being sent from one Dr to another by specialists who could only deal with one part of the picture.  The most useful consult I had when we were searching for a diagnosis, after seeing a neurologist (who really was helpful and supportive), was a rheumatology consult.  They test for things outside the box and often examine immunological issues in an indepth way.  I still see a neurologist annually at least, for other neuro issues that I experience.  

Additionally from a mental health perspective, try to look at your progress or maintenance of function over the mid to longer term, try not too focus on the losses, focus on what you can still do right now, otherwise, its unbelievably overwhelming in your position.  When I look back over 2.5yrs I have come a long way.  But if I look at my limitations, it still seems like I am not making huge leaps forward.

I hope you get some answers soon.  I am so sorry you are having to deal with this.  Hugs

Fiona