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Frustrated!!!!!

Posted by Lee H on 11/20/99 at 00:00 (012950)

Hi all, I need to vent. Just got back from a visit to the neurologist. (yes, even though it Saturday). He made a special appointment for me cuz the orthopedic I seen on Monday thought I had Reflex sympathetic Dystrophy Syndrome. This doc said he didn't think so (Thank goodness). Now they are sending me to a reumotologist. This makes doc #7 and not one of them have done anything what so ever to stop this thing, or even bring a bit of relief. My next appointments are not til mid December. I have the reumatologist apointment and an appointment with a doctor at the pain clinic. I don't know if I can survive another 4 weeks like this!!!! The past week was probably the worst I've had and at this rate, I will probably be crippled before my next appointments. I am fed up with this thing and am at my wits end. I had hoped to get an ok from this last orthopedic for the ossatron but she seemed to think there was more happening and the pf has advance to something else. She thought Ossatron would do more damage than help. She thought in my condition Ossatron would be excruciatingly painful. I was surprized she even knew about it, but she seemed well informed. I was looking at Ossatron as my last hope. AAAAAAAHHHHHHHHHHHHH!!!I HATE THIS THING, IT'S DESTROYING MY LIFE!!!!!
Thats all, THanks for listening! Lee

Re: Frustrated!!!!!

Lee H on 11/20/99 at 00:00 (012951)

By the way, I Hate Those Darn Monkeys, I would like to do more than just punch them!!!!!!!!!!!!!



Re: Frustrated!!!!! Re Lee

Laurie R on 11/20/99 at 00:00 (012953)

Hi Lee I know you are frustrated but hang in their!!! I feel the same way as you I am in so much pain..........Keep us posted on your pf.Thanks Laurie

Re: Frustrated!!!!!

John v on 11/20/99 at 00:00 (012955)

I certainly agree with you about the monkeys,

Re: Frustrated!!!!!

troy P. on 11/21/99 at 00:00 (012960)

Don't feel bad. I live in Rochester minn. and my insurance wouldn't pay for the Mayo clinic (to my opinion if its not a heart, lung, kidney, brain transplant they couldn't tell me anything either.)I went too mayo after i saw 4 other foot docters and they all went slow on the recovery. I went to mayo after the surgery and they (I got all the way up too the big wig for $1,800 and xrays for back pain which can be related in some arthritias. well guess what He sent me to a ruematoligist also and i was no where except back where i came.
GOOD LUCK ALL ,,,,FROM A 4 YR. SUFFERER..



Re: Frustrated!!!!!

wendyn on 11/21/99 at 00:00 (012971)

Unreal....what did your neurologist think it was? I have been diagnosed with everything from PF, sprain, tendonitis, TTS, RSD and once even Ankolosing Spondylitis. What were the reasons he said it wasn't RSD? (not that you'd want that, but I'm just curious how he ruled it out). My mom suffers from chronic back pain, and prior to her last surgery she had similar experiences with doctors. One of them even wrote on her chart that he felt that maybe her home life was the problem - not her back!!!

Anyway, when she was at her worst she did see a pain doctor. He was the only compassionate one in the bunch at the time, and did manage to get her pain under control until surgery. (It did involve a lot of heavy duty drugs though). I hope that your pain doctor will be able to help some. I really feel for you, and I will remember you in my prayers....hang in...



Re: Frustrated!!!!!

Marti C on 11/21/99 at 00:00 (012981)

I hope you will find something that will give you at least some relief. I will keep you in my prayers.

Re: Frustrated!!!!!

Rick R on 11/22/99 at 00:00 (013003)

I think you have figured out step 1 by the sounds of it. Somewhere out there there is a doctor that knows what to do with us PF misfits but I sure haven't found him/her yet in 16 years of my adventure. My path to improvement started when I quit going to doctors and started my own bizzare methods. Arch support was the key for me. Very tight taping of the arch close to the heel with 11mil duct tape (gauze first no tape directly on the skin). I'd be glad to share details if you want. Lots of luck

Re: Frustrated!!!!!

Lee H on 11/22/99 at 00:00 (013004)

Hi Rick, Sixteen years you say, now that is depressing!! I have tried all different types of taping (each Dr. seems to have a different method) and they all seem to just cause more pain. Also, have tried arch supports and they also seem to increase the pain. I need to find a way to get this pf to a point where it is bearable, and then hopefully taping and shoe inserts will help. If you find that perfect Dr. that knows what to do for us misfits please let me know. Willing to travel anywhere at this point for just a bit of relief. Good luck to you.

Re: Frustrated!!!!!

Lee H on 11/22/99 at 00:00 (013006)

Hi Wendyn, I'm not really sure why they ruled it out. They really didn't do anything besides check my reflexes, strength, eyes, back, ect... No other testing done. Would you believe after 6 doctors I have not had any testing done besides an Xray, and even that was back in May, since then the problem has gotten at least 10 times worse. I really begining to believe Drs. are totally useless. As for the pain clinic, I'm not really sure thats a good idea. I do not do well with any sort of drugs anyways. Even a simple cold medicine like Dimatap can knock me on my butt for days. What are TTS and Ankolosing Spondylitis? Are those the next things I will be diagnosed with? Thanks for your support. Lee

Re: Frustrated!!!!!

Lee H on 11/20/99 at 00:00 (012951)

By the way, I Hate Those Darn Monkeys, I would like to do more than just punch them!!!!!!!!!!!!!



Re: Frustrated!!!!! Re Lee

Laurie R on 11/20/99 at 00:00 (012953)

Hi Lee I know you are frustrated but hang in their!!! I feel the same way as you I am in so much pain..........Keep us posted on your pf.Thanks Laurie

Re: Frustrated!!!!!

John v on 11/20/99 at 00:00 (012955)

I certainly agree with you about the monkeys,

Re: Frustrated!!!!!

troy P. on 11/21/99 at 00:00 (012960)

Don't feel bad. I live in Rochester minn. and my insurance wouldn't pay for the Mayo clinic (to my opinion if its not a heart, lung, kidney, brain transplant they couldn't tell me anything either.)I went too mayo after i saw 4 other foot docters and they all went slow on the recovery. I went to mayo after the surgery and they (I got all the way up too the big wig for $1,800 and xrays for back pain which can be related in some arthritias. well guess what He sent me to a ruematoligist also and i was no where except back where i came.
GOOD LUCK ALL ,,,,FROM A 4 YR. SUFFERER..



Re: Frustrated!!!!!

wendyn on 11/21/99 at 00:00 (012971)

Unreal....what did your neurologist think it was? I have been diagnosed with everything from PF, sprain, tendonitis, TTS, RSD and once even Ankolosing Spondylitis. What were the reasons he said it wasn't RSD? (not that you'd want that, but I'm just curious how he ruled it out). My mom suffers from chronic back pain, and prior to her last surgery she had similar experiences with doctors. One of them even wrote on her chart that he felt that maybe her home life was the problem - not her back!!!

Anyway, when she was at her worst she did see a pain doctor. He was the only compassionate one in the bunch at the time, and did manage to get her pain under control until surgery. (It did involve a lot of heavy duty drugs though). I hope that your pain doctor will be able to help some. I really feel for you, and I will remember you in my prayers....hang in...



Re: Frustrated!!!!!

Marti C on 11/21/99 at 00:00 (012981)

I hope you will find something that will give you at least some relief. I will keep you in my prayers.

Re: Frustrated!!!!!

Rick R on 11/22/99 at 00:00 (013003)

I think you have figured out step 1 by the sounds of it. Somewhere out there there is a doctor that knows what to do with us PF misfits but I sure haven't found him/her yet in 16 years of my adventure. My path to improvement started when I quit going to doctors and started my own bizzare methods. Arch support was the key for me. Very tight taping of the arch close to the heel with 11mil duct tape (gauze first no tape directly on the skin). I'd be glad to share details if you want. Lots of luck

Re: Frustrated!!!!!

Lee H on 11/22/99 at 00:00 (013004)

Hi Rick, Sixteen years you say, now that is depressing!! I have tried all different types of taping (each Dr. seems to have a different method) and they all seem to just cause more pain. Also, have tried arch supports and they also seem to increase the pain. I need to find a way to get this pf to a point where it is bearable, and then hopefully taping and shoe inserts will help. If you find that perfect Dr. that knows what to do for us misfits please let me know. Willing to travel anywhere at this point for just a bit of relief. Good luck to you.

Re: Frustrated!!!!!

Lee H on 11/22/99 at 00:00 (013006)

Hi Wendyn, I'm not really sure why they ruled it out. They really didn't do anything besides check my reflexes, strength, eyes, back, ect... No other testing done. Would you believe after 6 doctors I have not had any testing done besides an Xray, and even that was back in May, since then the problem has gotten at least 10 times worse. I really begining to believe Drs. are totally useless. As for the pain clinic, I'm not really sure thats a good idea. I do not do well with any sort of drugs anyways. Even a simple cold medicine like Dimatap can knock me on my butt for days. What are TTS and Ankolosing Spondylitis? Are those the next things I will be diagnosed with? Thanks for your support. Lee