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 07-27-2008, 12:42 AM #1
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Default RSD Where Are Its Limits

For those of you who remember me. Heres a bit of an update.
RSD Where is your limit? Sadly i am finding it has none. If it is not enough it has control of my eyes, nerves around my heart, chest wall, hands, knees, and left foot, as well as the main nerve in the stomach my rsd has now decided to claim my digestive system as its own. The starting of this kicks off my 8th occurrence/continuation of my RSD. I am only 18 and started with this when i was 13. This Disease is outta control and destroying me. And i still dont get to see Swartzman till the 10th of September. I will be lucky if i am even alive by then. As its made it i have no fat left at all and this is no joke, its eaten away most of my muscle and i survive by going into the hospital and being pumped up full off all differnt fluids to stabilize me and then leave and than return again.
All the doctors i have seen about RSD assure me there has never been a reported case of anyone dying from RSD and assure me its not possible to. Well i think its pure BS!!! RSD is your puppeteer and you are its puppet there is no question to that. It will keep you just barely alive just to torture you. And anytime it wants it can pull your plug.

And so onward i go, i am not giving up but sadly there comes a point where you have no choice in the matter.
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Old 07-27-2008, 01:04 PM #2
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you might find this interesting. It was not RSD, but sometimes doctors don't know everything. You know yourself better then anyone.
http://melsreallifedrama.wordpress.c...s-young-woman/
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Old 07-28-2008, 06:32 AM #3
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First and foremost I am so sorry for your suffereing- it is so severe. And yes, I do have a freind that has RSD full body too(as I do)and has the severity of problems that you do.
I am glad you are getting closer to your date with dr. S- he is my doctor. You will probably never meet another physican with so much compassion. He is very kind. He can look at your instantly and see your pain, the source, understand it and begin to try to help you. He is a very talented neurologist, spent alot of his career teaching others.
So your heading in the right directlion for help. Do you have alot of burning , alloydina? Or have you passed that stage? The ketamine infusions help a great deal with that part of RSD. Keep us posted. Hoping the best for you, try not to despair- I know you are suffereing. Sincerely, CZ
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Old 07-28-2008, 02:21 PM #4
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Of course, I remember you LordWood! that clip was so very disturbing and needs to get out to many, many, about this horrid disease! I am so very sorry to hear about you with this damn disease getting out of control with you!! I have never heard of RSD so sever as that poor woman who passed away and also about yours being in such a horrid stage as it's in now. The suffering you have now, must be awful. Im glad that your going in to see Dr. Swartzman. He will get you on the right track. Until then, many prayers being said for you and I do hope you know, we all care about you. Much Love~Desi
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Old 07-28-2008, 05:25 PM #5
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dr.swartzman is in philly right .. can you tell me the phone number.. i no how you feel .. hang in there
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Old 07-28-2008, 09:36 PM #6
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Dr. Robert Schwartzman
Chair
Neurology
New College Building
245 N. 15th St
Philadelphia PA 19102
Phone: 215-762-7090
Fax: 215-762-3161
Email:
robert.schwartzman@drexelmed.edu


Best wishes...
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Old 07-29-2008, 07:27 AM #7
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Hi LordWood,

First of all I am so sorry for your discomfort and sad feelings. I know how you feel I have been there so many times in the past. I truly hope you feel better. I also see Dr. S and he truly is a compassionate man and Carol his secretary is also very helpful.

Good Luck,

An



Quote:
Originally Posted by LordWood View Post
For those of you who remember me. Heres a bit of an update.
RSD Where is your limit? Sadly i am finding it has none. If it is not enough it has control of my eyes, nerves around my heart, chest wall, hands, knees, and left foot, as well as the main nerve in the stomach my rsd has now decided to claim my digestive system as its own. The starting of this kicks off my 8th occurrence/continuation of my RSD. I am only 18 and started with this when i was 13. This Disease is outta control and destroying me. And i still dont get to see Swartzman till the 10th of September. I will be lucky if i am even alive by then. As its made it i have no fat left at all and this is no joke, its eaten away most of my muscle and i survive by going into the hospital and being pumped up full off all differnt fluids to stabilize me and then leave and than return again.
All the doctors i have seen about RSD assure me there has never been a reported case of anyone dying from RSD and assure me its not possible to. Well i think its pure BS!!! RSD is your puppeteer and you are its puppet there is no question to that. It will keep you just barely alive just to torture you. And anytime it wants it can pull your plug.

And so onward i go, i am not giving up but sadly there comes a point where you have no choice in the matter.
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Old 07-29-2008, 12:05 PM #8
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I'm sorry to hear about everything that you are going through right now ((pain free hugs)), I really hope you are feeling better. I don't understand what you are going through. I have never seen Dr Schwartzman as I am from the UK but from what I have heard and read he is a very compasionate and caring doctor so I am sure he will get you on the right track.
I am keeping you in my thoughts and prayers and I wish you the very best..
Please keep us all updated when you can
Alison
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Old 07-29-2008, 06:43 PM #9
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Hang in there! I am scheduled to see Dr. Swartman in 10/08. However, he is very far away. I am not sure whether or not i want to fly there from the west coast since i have profound limited sitting abiilty.
Best wishes to you and i will remember you in my prayers.
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Old 07-30-2008, 05:51 PM #10
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Hi LordWood,
I have no idea what it must be like for you and I am very sorry that you are going through all of this. I wish you would feel better and good luck with the doc.My prayers are with you. Hang in there. We all care. Update us when you can. Take care.

Sincerely,
Screwballpookie
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