First appointment with neurologist tomorrow....

[powderpuff]

Happy Thursday everyone,

I have my first appointment with a neurologist tomorrow....FINALLY! Head tremors, shaking all over whenu pset, and involuntary movements have gradually gotten worse over the months.

I'm not sure what to expect tomorrow and am a little afraid. I saw a neurologist sever years ago when I first started having symptoms of AI disease and to be honest he didn't do very much.

I am probably more afraid that the Neurologist will not really listen to me and I will once again end up with inadequate care or just more pills to take instead of getting to the root of the problem. 

My attitude (already) is that I'm not going to get much help tomorrow. I know I shouldn't go in with that attitude because I am not good at hiding how I feel and he/she will sense my attitude. I'm hoping something will be found to explain my symptoms but I'm afraid of what will be found.

I would appreciate some encouraging words and thoughts right now and maybe even some advice. Maybe it will help change my negative attitude. I really want to go in there in good spirits.

Thank you all in advance.....(((HUGS)))
Powderpuff

[quietdynamics]

powderpuff....wishing you a positive appt tomorrow.

Let us know how it goes.  Although first appts can be exhausting..so rest when you get home.

[paisley62]

Hi Powderpuff,

How did the Neurologist appt. go?

Paisley

[powderpuff]

Paisely,

It looks like we are going through some very similar symptoms, dragging foot, tremors, horrible back pain and stiffness, leg cramps, balance issues, PN. I've seen a rapid decline in neurological functioning in just a few short months. I'm afraid I may end up in a wheelchair if something isn't done.


The neurologist is starting with an MRI of the C- Spine to look at the structure of my neck and go from there.

She also took me off Gabapentin as I believe this only worsens the movement disorder. She put me on a low dose Elavil.

FYI-- My rheumy initially diagnosed me with the cousin of AS, Undifferentiated Spondyloarthropathy (USpA).... because of the back pain, stiffness, and many symptoms I've had in the past like psoriasis and iritis. I felt the diagnosis fit me to a "T".

Have you been tested for the AS gene, HLA-B27?

I believe Sjogrens and AS/USpA is more frequent than doctors initially believed.
Powderpuff

[Dee]

Powderpuff

I missed your post on the 8th but sounds like your appt went well and the neuro is ordering tests and trying tx options for you. 

Hope you're feeling better soon or already :-D

Keep up posted on your progress

Dee