Not sure.....

[Sailorsong]

If my Neuro is right about my Dx and the treament he has me on. The reason I say this is because I am developing new symptoms and old symptoms are getting worse.

His Dx is that I have Sjorgen's syndrome with spinal cord envolvement. He put me on Prednisone and an immuno-suppresant Azthioprine. I have been on these medicines for a little over 3 months now.

I sure would like some input about this. Am I thinking right about this?

New Symptoms:

Weakness in right hand, dropping things quite often when hand will open all on its own.

Swallowing problems, will swallow before I finish chewing food all on its own, some food getting stuck halfway down my throat.

Tripping myself with cane because my right hand will twitch inward on its own.

Electric shocks in right hand.

Loosing all feeling in left foot from ankle down.

Bladder problems

Worsening old symptoms:

Memory,
Numbness all the way up to my right hip (use to be only to my knee.
More electrical shocks in back and left leg.
More eye pain when looking up or to side (right eye only).
Longer periods of and worse amount of double vision.
Tremors in right arm worse.


On the good side my IBS seems to be getting better.

So what do you people think? Am I full of it or not?

Dennis

[Sailorsong]

A PPS:

   I'm not sure if the new symptoms could because I felt like I was going into another flare just before starting the new medication should be considered new or old. Also don't know how long the new meds should take to start their job.

Dennis

[Sailorsong]

I have read someplace (can't remember where) that some Neuros believe that Sjogren's is a form of MS. In addition to the usual MS problems it causes the immune system to attack the glands that produce tears and saliva. In my case when they did the spine MRI they saw an area of my spinal cord in my neck that was 1/2 normal size just below the brain stem. Iy is like the black holes in a brain MRI only this is in my spinal cord.

My Neuro thinks that area is from my immune system attack the spinal cord and therefore put me on Azathioprine to suppress my immune system. Personally I think my Neuro is wrong since my symptom seem to be getting worse. It is my feeling that my Neuro is wrong that I am asking about. Does it make sense that my symptoms could be getting worse if he is right?


Dennis

PS Lulu this is a Vanderbilt Neuro.

[Lulu54]

Dennis, I sure wish I knew something about Sjorgen's but alas, I really am blank.  I do agree that a call to your doctor is in order - does that mean the VA guy?

feel better,
Lulu

[Udkas]

Hi Dennis,
I really don't know anything about Sjorden's but if it can attack your spinal cord then perhaps it could be responsible for your new symptoms (maybe you are in a new flare of Sjorden's.

I think it would be a good idea to talk to you treating doctor or family doctor and then if you are not happy go and get a second opinion on all this, it would be worrying that everything is getting worse.

I thought you were still in limbo, I am sorry that you have a diagnosis, but yeah I hope it's the right one and they can get meds to help you.  I know it can mimic MS. Someone else more wise and educated might come along with an answer.  I just wish you to be well.

Udkas

Keep us posted,

[Sailorsong]

bump

[supermum_ms]

I'm not sure if you've already spoken to your dr but i think your adding of sx seems a lot, your on a new drug and have worse sx than when you started, always worth talking to your dr in my book.

Cheers.........JJ