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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 06-13-2004, 01:08 PM   #1
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Join Date: Feb 2004
Posts: 105
Gina2005 HB User

Hi MollyBrown

I saw that you posted your story and I just wanted to welcome you to the board. This is a really great place to ask questions and vent. Everyone is very supportive here.

Hope to 'see" ya around


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Old 06-13-2004, 06:15 PM   #2
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Join Date: May 2002
Location: NY
Posts: 3,185
sharon1030 HB User
Smile Re: MollyBrown


I also read your story and wanted to welcome you to the board. I'm going by memory here so let me know if I forget anything. I don't know if you have RSD, but it won't hurt bringing it up to the doc on your next appointment. The color changes sound similar to RSD, but I don't know anything about back problems that I know you have. There is no one definitive test for RSD. They make a diagnosis based on many tests and by ruling other diseases out. Sometimes, docs will do a block (lumbar sympathetic block for lower extremity and stellate ganglion block for upper extremity) to help diagnose RSD. If the affected area gets warm and pink and decreases in pain after the block, you might have RSD. But, if it doesn't do those things, it doesn't necessarily mean you don't have RSD. It could be that the doc didn't get the right spot. I hope I got all your questions. Good luck and let us know how you do at the doc.


Old 06-14-2004, 11:22 PM   #3
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mollybrown HB User
Re: MollyBrown

Thank you for your welcome posts Gina and Sharon. Tomorrow I will ask my Doctor what we can do now that all the other possibilities have been ruled out. I know my doctor said the MRI is fine but I definitely feel something pressing on something in my butt/thigh/back area that is giving me this pain in my leg and foot. Now I am beginning to feel something happening to the other leg and foot. I think my doctor kind of agrees and just wanted me to rule out other possibilities before he subjects me to other more painful tests and that is why he sent me to my primary doctor and a vascular doctor. Both agree it is the back causing this problem.

From these boards I gather the nerve finding tests can be painful. What are they, how do they get done and is one better to have done first?

Oh, just to make things interesting...I received a telephone call from my job's HR rep.
He called while I was moaning in pain this afternnon, to tell me my company has found (after five months of short term disabilty and one month shy of being eligible for their long term disabilty insurance), that I am being terminated for poor job performance! When I asked how can they say suthis he told me a few of the (trumped up) charges that my boss submitted to him. He said he was mailing me the papers for cobra and I should send a check for 575.00 by 7/1 for my health insurance. I can't believe the extent some people will go to when the are angry. My boss was really upset when I gave him the hospital letter stating I needed surgery for my unstable head (C3 ACLF).
He actually asked me if I could call my surgeon to move the surgery up a couple weeks! I just looked at him with astonishment and then said My doctor had arraged this so quickly because it was an emergency and not something that could be put off.

Oh well, let me let go and let God. And I will let a lawyer take a look at these papers when I get them. I just can't run after this right now, I feel so terrible unless I take a lot of meds. Then I don't have any energy.

Most important, which tests can I ask my neurosurgeon to do that would defitly show where I have a nerve being pressed. I feel like if he could just find it and release it the pain would just lift off my leg and foot. Truly I feel like it just needs releasing somewhere.

Thanks for listening Gina, Sharon. I hope I get to know you by your posts to see how you are doing too! Here's wishing all some relief tonight and a cure by morning! (We can wish, right?)


Old 06-15-2004, 06:15 PM   #4
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sharon1030 HB User
Smile Re: MollyBrown

Hi MollyBrown,

I don't know if you're referring to an EMG when you talk about nerve tests, but that's one of them. They are painful, but not the worst thing I've been through and it sounds like it wouldn't be the worst thing you've been through either. They're kind of a scary thing on this board because when you have RSD, any kind of trauma, no matter how minor, can cause RSD to spread or flare up. They put needles in the area being tested for an EMG and this can cause RSD to flare.

I don't know what definitive tests can help your docs to figure out what's going on with you. Sometimes there aren't any as much as we all wish there were. Sometimes medicine seems like an educated guessing game, but that's life I guess. Hopefully, this doc you're seeing will be able to help you and figure out what's wrong. Let us know how you do.


Old 06-16-2004, 02:55 AM   #5
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mollybrown HB User
Unhappy Re: MollyBrown

Hi Sharon
I am awake since 2:00 AM. The trip to the DR knocked me out of all energy. My entire body is in pain from the subway steps, the walking, the bus ride, the walking agin, all to get to NYU to see the doctor.
Of couse he looks at you and says "you look good".

I'm not that bad looking so people pften judge my medical progress by the nice way I look!

I told the Dr about my pain. He looked at my feet..actually, he glanced at my feet and ankles from a few feet away. Then he asked a few questions but nothing else. I initiated all the questions I could get in like "should I seek pain management because even though my feet looked OK that moment I still suffer greatly everyday. As I sat on my butt area my foot began to swell (within 5 minutes). So I told him I still feel a compression when I sit that starts the pain cycle in my foot and then starts my calf to hurt so badly that I moan and rub it. He said "good idea". I told him I called the PM DR I had seen 3 yrs ago for epidural injections in my spine and made an appointment for Monday. He asked who I referred to and when I told him he said "Oh, that's my friend. Tell him I sent you". Then I asked for my recent MRI films so I could bring them to the Neurologist that recommended him so he could take a look and his reply was, "OK, take these, but I don't think he can read them" !
I said the only appointment I could get was July 6th and did he want to see me afterwards? "Yes" he replied. Then I asked if he would send me for physical therapy Yes to that also. Then he stops my questions and says I should just keep taking the Neurontin (1800mg a day) and the Vicodin and give it time, the pain will go away. I made my appointment with him for next month, then left. I had to lie down in the hospital lobby for 15 minutes before I could attempt the trip home. (I have been in the house since February!)

Then I took the walk, bus, train, walk to get home. two hours! I cried while I took baby steps, aching all the way. I am severely hurting from this trip. But, he thought I "look good"!

The Pain Management Doctor I will see Monday was really great when I went to him several years ago. I do expect he will help me further on my quest for relief and prognosis.

I have to take the script for physical therapy to the ortho center near my hous to see if I can schedule the sessions 3 time a week. I can imagine how I will feel after those!

PS I don't know if you saw my post that my company fired me yesterday, so now I have money issues to cover a cobra payment 7/1 for 400.00. Hope I can ar else all these doctors won't be seeing me.

I'm sorry for this lengthy story. But it helps to have someone listening! I am totally alone. "Looking Good, 50, and alone".

Old 06-16-2004, 05:52 PM   #6
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Join Date: May 2002
Location: NY
Posts: 3,185
sharon1030 HB User
Smile Re: MollyBrown


I did see your post about your losing your job. I just forgot to reply. I'm so sorry about that.

Was this doc you just saw an ortho or neuro? I went to NYU for a while too. I went to a pm doc there until he left and went to Cedar's Sinai in CA. I live on Long Island so now I see a pm there. Small world! I used to go to New York Hospital until my pm doc moved to NYU.

Sorry you have to go through so much to get to your docs. I understand though. I had to too, but it is worth it. They do seem to know more and see more in Manhattan than they do around here.

I'm sorry you didn't get too far with this doc. Hopefully, the pm will be of more help to you. Good luck and hang in.


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