Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group bum rap(venting)

i went to the rheumy today and i thought id get a remicade treatment i was wrong...duh what was i thinkin things were starting to be good...he did his examination told me that we are going to get back on remicade, now here come the kicker......as he was examining me he commented on my shaking yall know those tremors ive been tellin him for the last 5 years he looks at me with concern on his face and told me to get my GP to refer me to a neuro as soon as possible because it looks like i got parkinsons well duh doc ive been tryin for 5 years to get the neuro's to start testin me but they dropped the effing ball and lost the first scan they did, so instead of just havin me do another scan they just sat on theyre rears, duh hello people why am i shakin so much and its getting worse....now i get to try to see the neuro again for testing for parkinsons...i even told them i got an uncle with parkinsons...my wife is upset because we knew somebody that died from parkinsonss so of course she is thinkin that im gonna die now....now she is bein supportive lovely aint it it wasnt me bein in pain all these years and finding out what my back is doin to get her to support me it only took a death sentence in her mind to start takin an active interest in my health problems....nice woman huh....does anyone know what im gonna be goin thru on these tests????? i guess i gotta research this effing disease now as if i dont have enough diseases already.....geez im really effing up aint i???? only good news i got from the visit is i'm gonna go back on klonopin for my RLS he told my GP to pre-authorize it and stop takin the effeing mirapex since that s**t dont work anyway.....i go in just to get back on remicade and i get all this other effing s**t dumped on me, as if i dont already have enough on my plate....thanks for letting me effing vent.....oak

I am so sorry you are having to go through all this.I am not sure what type of tests are done for parkinsons,but I think bloodwork and a neuro exam are the first ones.My grandmother had parkinsons...my grandfather had AS.
I have AS,DDD,a brain lesion thought to be M.S and now 4 yrs later undetermined.I have had tremors and Rls too.

It is horrible to know what the probable answers are and NO DR will listen until things become drastic!I hope you get to a good neuro.Did you still recieve your remicade?
I have had back problems...herniations,stenosis,spondylitis,nerve compressions etc for yrs....and I know how you feel about lack of spouse support.Sometimes I think It's understood..and then other times I don't believe my husband even has a clue as to what my days are like in my shoes.I think spouses have different coping skills at different times.
Don't get discouraged.Hang in there and let us know what you find out!
While waiting on Enbrel delivery which could be a while due to insurance b.s...My DR called me in effexor for PAIN!
That's like putting a bandage on a gapping wound.Sometimes DRs just don't get it!I want to call and say to the DR...I said PAIN...not Depression...but depression will set in soon at this rate!Restless

no i didnt get the remicade but im goin to start getting it i just gotta know what day and if i have to start from scratch again or just every 8 weeks, i am having a very hard time with this even tho i kinda knew what it was, i was just hopin it just a pinched nerve from fusing, well one can hope, its just my good luck that its worse than i pinched nerve....LOL......sounds like your havin a tough go at it too, you hang in there too.....oak

((((((((((OAK))))))))))))
vent away you have every right.
yoly

Ah hon, vent away. You've had such a frustrating time of it. Which is probably the understatement of the year!! I cannot imagine a doc sitting on something as important as a potential Parkinsons diagnosis. What a total jerk (and that is not the word I wanted to use by any means!)!!

Many hugs,

hey kat ive said them words to myself trying not to write them, i hope my GP reams some neuro butt for this, she wasnt to thrilled when they dropped the ball to begin with....well hopefully now we can get me tested, which was all i wanted to do from the beginning...its just like pre AS days, noone would believe me....i am really ticked ive been researching and ya i got it ive had it for years i think the AS triggered it. chalk one up for the monster again.....oak

Wow Oak, I cant help with the test info but I wanted to add my shoulder to help the load....I am prayin for ya man!!!!Sometime you just want to grab thoe doc's by there so and so's until they pay attention to you.. That just shouldnt be....Stay strong and keep us posted..

Angie

thanks for the shoulder i can really use the support, i finaly got over the shock from hearing it that my tremors finaly got a name not the best news but at least i can get the proper treatment goin...thanks......oak

Oak,

Vent away mate, you've been through heaps....

I know from experience that meds can cause parkinson type problems, and desist when you stop but that's probably not much solace for you at the moment. I saw your post regarding the checker for drug cross reactions so I guess you are checking that out.

Can you get to a pharmamcist some of those guys have a much better understanding of the drugs than the docs?

Dave

davo, i usually check all resources before i post but this time i didnt it aint all from the meds ive had these shakes since 1991 way before i was on any meds and all the docs were tellin me that its all in my head even some neuro's when i was admitted a few times.....i did check out the drug interaction page and ya welbutrin has a reaction to 3 of my other meds so i know part of it is due to meds but since i had these shakes way before i was on any meds that its a good chance my rheumy is right since they have been getting worse i just started back on my meds and my shakin was still there even after 3 months of bein off all my meds....oak