Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 04-04-2014, 10:31 AM #11
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I thought that too!!!

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

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Old 04-04-2014, 11:28 AM #12
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Thanks Renee,

I would really care to know how your experience is if you follow through! Please do keep us posted. I am finding that those of us with RSD/CRPS that has gone on for "years" do have many autoimmune issues. I did also post that I have tested positive for some genetic mutations that tie into neuro and vascular disease... and I'm following up with extensive autoimmune testing. No one has a road map yet for what to do, but we are providing a great start. Bravo Renee and all of you who push through the barriers to understanding and treatment. May we all keep each other informed. So far, my biggest marker is MTHFR in relation... it is common in the population and strongly affects the ANS. While perhaps not curable,it can be treatable!

Best for all,

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Old 04-04-2014, 03:16 PM #13
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Quote:
Originally Posted by Vrae View Post
oh no no, I was just curious about type. I'm sure they take both as they are so similar. Was it surgery that lead to it or something else?
I had a closed reduction on my right wrist, after breaking it in several places, after slipping and falling on the ice. One of the bones was almost poking through my skin on the top of my hand. There still is apparantly a floating fragment in my wrist, which cause sharp pains sometimes, but apparantly the dr who did the closed reduction thought this was okay. I have a crooked wrist, because it is malaligned and is immobile. I cannot bend it at all. And I cannot bend my fingers all the way. I was diagnosed with CRPS I by a pm dr about four months after the closed reduction. It's been a nightmare ever since. They think my rsd was triggered by the closed reduction on my wrist.
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Old 04-04-2014, 03:26 PM #14
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Quote:
Originally Posted by gotnerve View Post
I called and was told they do not accept my insurance; fees would all be applied to my out of network benefits and the estimated cost for an initial visit was more than $1,000. Most importantly, I'm not sure this place is legit. It appears to be an umbrella organization for a spine center!! That's what I discovered at least. The doctors themselves may be good, but how much do they really know CRPS.
You will be MUCH better off finding a quality pain management specialist at a major hospital like HSS and St. Lukes Roosevelt where they have a dedicated team treating CRPS patients and follow/offer CRPS treatments.
Thanks for the heads up. I just got an email from them today to call them to set up a consult. My husband is going to help me with the call because I have trouble comprehending things with all the pain meds I'm taking. I don't understand insurance either. Even without pain meds.lol. My husband does though and will talk to them. I'll let him know what you said. I don't want anyone touching my spine. I'm not as brave as Tessa with that Epidural procedure that she did. I have scoliosis and am too afraid of complications. But if they want me to try an infusion in my good arm with an IV, or try a new drug like neurondrate (sp?) I think I will let them. I'll keep you all posted. And thanks again everyone for caring so much.
PS: Welcome GotNerve! I like your name too. Cool Man.lol.
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Old 04-04-2014, 04:59 PM #15
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Quote:
Originally Posted by RSD RENEE View Post
Thanks Nanc, Bram, LLynnia and Tos for your caring thoughts.
Nanc, Thanks for reading my post and always being such a good friend. You are always so kind and caring.
Llynnia, I was tested for rhuematoid arthritis because it runs in my family, but was told I don't have it. I have fibromyalgia, but that's not considered an auto-immune disorder. I don't think I have any other auto-immune disorder beside rsd. I think rsd is an auto-immune disorder because it is ruining my immune system. I glad that you don't have rheumatoid either.
Bram, You are so darn smart. You should be a doctor, seriously. You knew exactly what I was trying to say about the immune system and IVig trials. That's what this institute in Manhattan is exploring. If they let me, I will consider being a part of this trial. Thank you for explaining to me and everyone what this institute is trying to research. I'm not very good with words and not as smart as you. I really appreciate you explaining what I was trying to say.
And Tos, I hope that your visit to PA will be a good one. I hope they can help you. If you would let me know how it goes, maybe I'll check them out too. PA and DC aren't that far from me either. I first thought the Manhattan clinic would be too far, but at this point two hours is worth it if they can help make me feel better.
I will let you all know how it goes. So far, I have not heard back from them yet. I hope I hear from them and soon. Thanks again for your caring and support. I wish you all a pain free and peaceful night.

Will do! Im hoping to go to PA and try the IVIG aswell, as they also have the trials going on. If im not a candidate then I want to look at all options, which would of course include ketamine and I def want to talk to them about what Tessa is trying. Im not looking for a "temporary" solution, im looking for a more "permanent" one and Tessa so far has that down! I know all of this is experimental, but gotta try something and im looking for the something that's gonna last longer. Ive been in pain long enough and im tired of suffering. There more humane to animals then they are to people.
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Old 04-04-2014, 05:20 PM #16
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Thanks Tos. And thanks for letting me know about this institute. I will pray that you have success with your dr appts too! I think there is hope for all of us as long as we keep trying to find a cure. It's when we stay stagnant and let our fears stop us from trying that we don't move forward. My thoughts and prayers are always with all of you. WE CAN DO THIS!!!!! With love, Renee.
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Old 04-05-2014, 08:31 AM #17
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Good luck!

Let us know how the consultation goes
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Old 04-05-2014, 03:28 PM #18
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I have had RSD or whatever name they want to call it for almost 30 years now. RSD was the new name when I started out with it.
There were 2 types then with different names, plus different stages.

All these years and no progress..
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Old 04-05-2014, 08:13 PM #19
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I don't want to pour cold water on anyone's interest in this pain centre but it came up ages ago on these boards when it was first opened and I researched the doctors they have. I can't find my post so I will just very quickly say that I don't think this place really has anything like the specialist CRPS experience it claims.

The lead doctor's key clinical specialism is implanting spinal cord stimulators and spinal pain. That should tell you what the general "tone" of their treatment approach is likely to be. There is one doc who claims to have specialist CRPS knowledge but he isn't one of the regular names that appears on the quality research or clinical papers. The others doesn't seem to have any particular CRPS experience.

Don't let the fact it's called an "Institute"lead you to think it is necessarily anything special. It is a pain clinic but I don't see evidence of any true specialist CRPS expertise. There are specialist centres in the US but this isn't one of them.

Before spending a lot of money and energy, I think it would be wise to do plenty of research on the clinic and its doctors. If you want to see CRPS specialists, I think there are other places you could look at in the US. You need to think really hard about what exactly you are wanting/expecting to get out of going to see these or any other doctors at this stage in your CRPS journey. Be honest with yourself about that and search to see whether there is somewhere else that could suit your particular needs and goals better.
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Old 04-06-2014, 08:51 AM #20
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You can check the inclusion criteria for these trials online. This lets you check all of the specific criteria that you must meet in order to qualify for potential entry into any given trial. You will also find a list of all of the factors that would specifically exclude you from participating. These are listed on the database. It may save you some time and effort later.

Make sure that if you are considering involvement in a clinical trial, it is officially listed and regulated.

By all means take up the offer of a free initial consultation and find out about this clinic but remember there is no such thing as a free lunch!!! If it looks and sounds too good to be true then it will be too good to be true. Don't be pushed into anything. Too often places will promise miracles to get you hooked in but then the reality is something else entirely.
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