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newyorkmets 01-02-2017 12:24 AM

Quote:

Originally Posted by Littlepaw (Post 1231592)
NYM,

Geez, let's hope if it's something more rare it at least has a more definitive treatment. I'm not arguing with your doctor of course but there are movement disorders associated with CRPS. We actually have a member whose primary symptoms are motor related.

Movement disorders in complex regional pain syndrome. - PubMed - NCBI

That said, you know I am a huge fan of an adequate workup. It is always good to have information. I don't know/remember how you ended up with CRPS or what was done to rule out other problems. Nerve conduction studies and imaging can be quite helpful. A fresh set of eyes on your case from a new perspective could make a difference for you.

I'm with Sophie on the ketamine cream. My topical has it and it's less than $200.

I hope that taking this new direction gives you information that is helpful. Turning over a few more stones is not such a bad idea. Please let us know what happens. It would be wonderful if this opens another door to healing.

That's what I was thinking as well! If more options are made available in regards to treatment, maybe going down this path wouldn't be such a bad idea. On the medication I originally asked about, I never brought it up with my doc because of being put on Baclofen for my spasms. It's hasn't helped so far, as I expected and maybe I'll add it if I get rid of this one. As you also mentioned, I don't see why I can't have a movement disorder AND CRPS. I read a study that 1/4 of RSD patients obtain it along the way. I don't know which one I have or if I even have one but I'm just trying to optimistic that I'm diagnosed with something more drastic like p's disease as I'm supposed to be too young to have it, even though there's early onset of it. Some symptoms do match like tremors and I find myself thinking way too much to complete even the simplest tasks, as well as bending my back when I walk and a lot of tingling in my hands but I rather not.

Littlepaw 01-02-2017 06:39 PM

I hope your consults go well. Information is always good and sometimes new disciplines really can make a difference. My consult with a peripheral nerve surgeon was life changing when many others had given up. (my CRPS came after a later procedure) I am staying hopeful for you. Please let us know what they find. Tremors can have several causes so it's worth running this down. When my tibial nerve was badly entrapped I had weird fasiculations in my calf and thigh constantly. Those stopped after my nerve surgery. I'm not saying that's what you need BTW, just citing my experience. Continuing to look for answers and treatments brought me massive improvement and I am praying it does for you too!

on the tingling in your hands, do you think that is related at all to your crutch use, either from pressure at the armpit or wrists or tension in your shoulders? - just a thought...
:hug:

RSD ME 01-05-2017 01:25 PM

Hi Mets. I've never tried that but if you do I hope it helps you find some relief from your pain. I take gabapentin and pain meds (that my pm dr prescribes for me) and that seems to help manage my rsd pain a little better. Sending soft hugs to you my friend.

newyorkmets 02-18-2017 10:47 PM

Hey everyone. Just thought I'd post an update! I had a nerve conduction study done yesterday after waiting a month for it. Basically, it was an EMG except there was no needles thank god. They measured my tremors and its frequency, how high or low it is as there should be a correlation between that and possible nerve damage although I'm a little confused on this front. My problem is that my leg shakes too much so would this indicate anything? The thought is, from what I've read, is that something is wrong if your impluse is too slow and not the other way around. Hopefully they figure it out.. I'm in the process of revamping my pain management, physical therapy team too so that's fun. Any suggestions in New York or New Jersey would be great

Shay08 02-20-2017 09:39 AM

Sorry I can't give you any advice or suggestions on this. I just don't want you to think that nobody cares. Thanks for the update and hopefully someone will chime in with some good info for you. It is good to know that your doctor is still looking for answers and not giving you a diagnosis that may not fit. Good luck with the new pain management and physical therapy team. My thoughts and prayers are with you.

Shay

Becca71 02-21-2017 10:35 PM

:Late to answering, but my Ketamine cream is covered by my insurance.


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