thank you guys for the fantastic detailed info. the pain clinic found bercytis (sp?) in both knees. they are going to refer me to a sports doc for a nerve conductive test and wrote a note to my neuro to check for dystonia. i also have a referral for accupuncture.

my own suspicion? meds..

more later

Best of luck. Don't let them "guess" at the issues. Bursitis is good news relatively b/c it's most often treatable with good results. I have bursitis in my shoulder but NOT in the hip as several docs insisted. Don't let them guess, make them determine a diagnosis with hard data and explain why to you.

I "made" them x-ray my hip and then MRI it to prove there was NO physical problem which a number of docs told me I had arthritis/bursitis not DAWS. The x-ray and MRI proved me right. You may be right about meds, I've had a heck of a time with swelling related to meds in my knees, feet, and hands which were NOT bursitis or osteoarthritis as they insisted. Stick to your guns and do the research.

Hopefully you have a good doc that will think about you and determine a diagnosis based on data. I wouldn't worry too much about the botox. It can be a wonderful relief if done by an experienced doc. That is what I originally went in for when misdiagnosed with PD. I wanted some botox for my painful wrist (they use it a lot for tourette-like ticks and dystonia in extremities etc with great success. Esp if this is not around your larnyx, throat, eyes, etc it's pretty hard to mess up.

I have not heard of it migrating anywhere else as you were concerned in any friends or co-workers unless they went to an inexperienced cosmetic type doc. Even then it was confined to very near the injection site, not bladder etc. I suppose there is some risk inherent with an injection of any kind, but you can always ask for a bit of time to decide.

If you are nervous ASK this doc how much of botox she/he has done and how many patients they used it on etc. Also ask how much they intend to use and why? and what was the complication rate? And go do your research. You don't have to decide right away. It takes 1-7 days to become effective and it IS temporary 6-8 months average. If you need a few days to get some information it shouldn't be a big deal. Also ask for alternatives you might be more comfortable with. If you think it truly is meds then tell the doc and explain why you don't want to try botox right away because of that.

Botox is expensive if your insurance doesn't want to pick it up. I got both my docs to write letters of medical necessity and the insurance covered it every time for migraine and trigger point injections for my shoulder and back. It might be a $2500+ for botox if not covered so you can always ask for time to find out.

Hang tough, but then I know you are. Here's the Dr Oz link http://www.drozfans.com/dr-oz-recaps...bs-in-8-weeks/

Hello Harley It has been a very long time since I have posted on this site. You may remember me from posts back in 2004 - 2006. I have been plagued with dystonia since dxs of PD and it has caused me much grief. It affects my left side from my foot all the way up to my neck. Not always all of my left side, sometimes just my leg and other times just my arm. It does seem to have a mind of its own. With it I have tremor but that is the only time I have tremor. Fluctuations usually bring it on as well as being undermedicated. Levadopa seems to be the only thing that helps once it finds its balance. I take my meds every 1 -2 hrs to keep a steady flow. When I am in a desperate state after a prolonged period of dystonia I take Lorazepam with the levodopa and it seems to give me some relief. I am presently in the screening program for DBS surgery. There have been good results with releiving dystonia with this procedure. I have reached the point where it is an option I am willing to try. All the best, I have followed your posts for years and I know you have had a rough ride.

i take nortriptyline and have been waking up on. I take medication right away and have a little off and dystonia, sometimes none. i take 50 mgs of it at bedtime. Before was taking it in 10mg tabs throughout the day. Neuro suggested a 50 mg tab all at once. It's bought me some time and I can still increase the nortriptyline as high as 150 mg. That and brand name sinemet [$70 copay] which i find to be much smoother have really helped me with the dreadful D.