Finally I am Diagnosed

I have my appointment with my new neurologist the one that is more specialized in rare muscle disorders that my previous neurologist.   I have waited another 4 months from my last visit for this one to take place.  I finally hear the words I have been waiting for... you have Stiff Person Syndrome.  It took a minute for it to really sink in,  I am not crazy?  No denying it's real that I am not a  hypochondriac. He wants to re-test me for GAD 65 as he fears with all that happened it was done incorrectly, same with my NCS/EMG as he watched my leg muscles non-stop twitching.  He has no doubt that is what we are dealing with.

He starts by asking me to describe what I am experiencing:

I can no longer walk for long I start to tremble and my legs start to give out on me.
I can no longer do basic household chores.
I can no longer take baths I can't get into a tub without falling down, my brain knows what my body should do but I can't get my body to move the way it should
I am having trouble swallowing, again my brain knows what it should do but I can't get the muscles in throat to do the action, the only things that gets them working again is to drink water really fast to get them to work the way they should
I cannot sit upright for long periods of time the muscles stiffen up so bad I can't move
I cannot bend forward as the muscles start to spasm and push against my rib cage
I cannot stretch again my whole body feels like an electrical charge is going throughout

The list could go on...

He said from the moment I walked he saw my legs were not bending like they should.  He tried to get me to walk a straight line like they do on a sobriety test and I could not do it.  Even trying to start by putting one foot in front of the other I started to fall, and as I tried to lift my leg to move it in front of the other it was like walking on a balance beam only I kept falling off.  I can no longer lift myself on my heals or the tip of my toes.  Having me stand with my arms out and eyes closed he had to grab me as I started to fall backwards.

You can not believe the validation I felt at the moment as much as I would have preferred some other outcome, to wait 17 years to hear the words that you really have an illness I think the weight of the world lifted at that moment.

I am on a low dose of diazepam for now until my next NCS can be performed but at least I know what I am dealing with.

As always with our wonderful medical system is I have to wait until April for that test but the great thing about this wait is he is the one who is going to preform it.