[firegirl]

My primary doc called the neurology department to see if they had any ideas to help this flare I am in. Neuro doc said for me to take Prednisone & come in 2 weeks later to see him. I didnt take the Prednisone bc I've taken it several times with no results. So, my appointment was today. I wasnt expecting him to suggest anything I havent already tried or at least looked into. The doc's student came in first & said u definately have RSD & kept trying to give me a physical exam, which I am too sensitive for. Then, the neurologist came in. He said that "he's not sure that he believes RSD exists, but if it does, that is what I have". haha!! are you kidding me????? Then he starts saying, maybe you just have shingles (since April '07???). I had NO symptoms of shingles at all besides pain on one side of my body. He recommended I let him do another EMG....yeah right....way too painful. His other suggestion was that I should get a spinal tap done to see if there is inflammation at the rot of the nerves. If so, he would put me on a med for that. Finally, he gave me a PT referral (already had PT, OT, and aquatics). He made the referral bc I told him I didnt want the EMG & spinal tap. I brought up my concerns about the spinal tap leading to spread, but of course he said RSD doesnt spread!!! What a joke & a waste of time.....Not to mention, I am in horrible pain from the 2 physical exams.

[Lisa in Ohio]

Why does it always seem like we have to get the doctors that know nothing about this condition? I had to have some hospital testing last week, and nobody that I talked to there knew a thing about RSD. I am not even sure that the PA at my primary doctor knows any thing at all about it as she prescribed a drug that put me in an almost unbearable amount of pain. I guess the real question is, how do we grow awareness of this condition, both in the public and in the medical profession field? Lisa

[Jimking]

I am absolutely 100% convinced when it pertains to RSD those living with this disease unfortunately live in the stone age as far as treatment goes. I am totally flbergasted the way people are treated and the ignorance most doctors seem to have and I do mean most. This disease is not common and maybe on the rare side but not so rare that these doctors remain oblivious.
I've seen many times doctors seem to think RSD patients are lazy or drug seekers or have some alterior motive and because of this I asked my wife's doctor (wife has RSD) in all the time in her career has she ever ran across a drug addict who faked RSD to acquire drugs or anything else for that matter. Answer was "Never".

firegirl, I pray you'll get relief, be persistant. My wife refuses all evasive treatments and always has.

[Jomar]

It's like they don't know about the internet !!

I felt like saying this to some of the drs i saw for my RSI/TOS!

"" Hello doctor, do some reading online, surely you should have access to much more materials than us regular folks!~""

It's like if there isn't some easy test that shows a problem, or a pill that will help, or something they can do surgery on they don't care to learn about it.

Then if you talk like you might you know something that is wrong with you & they don't know it - they get all bent out of joint.

That's my rant ..
I sure know what you mean...and how you feel.

Can you tell I'm a bit burned on MDs, LOL

[lovefamilypets]

I totally know how you feel. I have a feeling all RSD patients do. The last pain doc I saw told me he thinks it is just tight muscles... yes 1.5 years of hand burning, aching, temperature changes and swelling must be caused by tight muscles in my neck... that makes total sense why didn't I think of that...NOT!
Hang in there! I hope you find a good doctor that truly understands what it's like to have RSD or at least be willing to listen and learn.

[Wilbyfree]

Originally Posted by Jimking

I am absolutely 100% convinced when it pertains to RSD those living with this disease unfortunately live in the stone age as far as treatment goes. I am totally flbergasted the way people are treated and the ignorance most doctors seem to have and I do mean most. This disease is not common and maybe on the rare side but not so rare that these doctors remain oblivious.
I've seen many times doctors seem to think RSD patients are lazy or drug seekers or have some alterior motive and because of this I asked my wife's doctor (wife has RSD) in all the time in her career has she ever ran across a drug addict who faked RSD to acquire drugs or anything else for that matter. Answer was "Never".

firegirl, I pray you'll get relief, be persistant. My wife refuses all evasive treatments and always has.

Dear Jim, I do have to agree with the stoneage, I actually got a giggle out of that one. "the ignorance most doctors seem to have", this sentence stuck out like a sore thumb!! I believe most, if not all, doctors really do not want to treat "we the people with rsd." Ignorance is just their way of getting out without jeopardizing thier reputation. Let's face it, it is a very painful disorder, and the treatment plans are long term. My PCP actually every doctor in the office, attended seminars for this disorder four or five years ago. They are very knowledgeable about rsd, but they do not want to treat the patients. My PCP will and does treat me only due to the fractures, nerve damage, and every other test I have taken that affirms their suspicion. She does not want to treat the disorder due to the enormous amount of people who search the internet for disorders (drug seekers), for street value, or personal use, and this is one of those disorders that does not have any profound definition and this is why so many of us are scrambling around looking for doctors and left in severe pain. We are left (stoneage) due to the ignorance of many. It really is sad. I so agree with your wife on the non-invasive, I just had the better of my two feet, fused, tarsal tunnel entrapment and am just praying that this at least calms some of the post traumatic pain but has indeed flared the causalgia in both feet. I know the flare will pass, but wow, getting through it is rough. You know, you get to a point where you just want to be left alone and play out the hand that you are dealt to the best of your ability and to find a good knowledgeable, caring doctor is a must.

As always I wish you and your wife the best.

Firegirl, keep searching, there are doctors, not many, but they are out there we just have to keep doing the leg work and for most of us we are already lacking in that area. It took me years, but both of my doctors are aware and caring. I too bit a few frogs along the way.

Wishing you all a great night

Jeanie

[keep smilin]

Originally Posted by Wilbyfree

Dear Jim, I do have to agree with the stoneage, I actually got a giggle out of that one. "the ignorance most doctors seem to have", this sentence stuck out like a sore thumb!! I believe most, if not all, doctors really do not want to treat "we the people with rsd." Ignorance is just their way of getting out without jeopardizing thier reputation. Let's face it, it is a very painful disorder, and the treatment plans are long term. My PCP actually every doctor in the office, attended seminars for this disorder four or five years ago. They are very knowledgeable about rsd, but they do not want to treat the patients. My PCP will and does treat me only due to the fractures, nerve damage, and every other test I have taken that affirms their suspicion. She does not want to treat the disorder due to the enormous amount of people who search the internet for disorders (drug seekers), for street value, or personal use, and this is one of those disorders that does not have any profound definition and this is why so many of us are scrambling around looking for doctors and left in severe pain. We are left (stoneage) due to the ignorance of many. It really is sad. I so agree with your wife on the non-invasive, I just had the better of my two feet, fused, tarsal tunnel entrapment and am just praying that this at least calms some of the post traumatic pain but has indeed flared the causalgia in both feet. I know the flare will pass, but wow, getting through it is rough. You know, you get to a point where you just want to be left alone and play out the hand that you are dealt to the best of your ability and to find a good knowledgeable, caring doctor is a must.

As always I wish you and your wife the best.

Firegirl, keep searching, there are doctors, not many, but they are out there we just have to keep doing the leg work and for most of us we are already lacking in that area. It took me years, but both of my doctors are aware and caring. I too bit a few frogs along the way.

Wishing you all a great night

Jeanie

Dear Jeanie~

I am troubled by your statement..."you get to the point where you just want to left alone and play out the hand your have been dealt to the best of your ability".. My dearest friend..This where you and I do pick me up..This time I pick you up to say..yes..although these are our cards but admittably they are ugly..nasty.. painful cards..you are never alone in your fight..I will march, best I can right along side of you..hill and dale to see you thru..Dang cards.. I never was got at em anyways..

My story on this Dr. stuff is so disturbing also..At the time when my SCS implant was to be done..The Neurosurgeon insisted I wait for the smaller unit to be manufactured, as my stature is small and he felt I shouldn't support the unit available..so I was ok and patient with his feelings...8 months later, no unit yet!! I the mean time, this Dr. ordered an MRI to be done to map out space for the wires..Well..4 mos. after the MRI was done..my PM Dr. asked for the MRI results..at that time, we learned that my MRI showed a herniated disc in my back and the Neuro. never caught it..why?? Cuz he never read my results of the MRI scan...THEN the Neuro. asked me to come in the next day and literally ripped me apart for my results and RSD!!!!Included saying RSD does not spread... Needless to say..another Neuro. implanted my unit...and in record time..2 weeks later..ggrrrr!!!!!

Hugz everyone....

Kathy

[hope4thebest]

Originally Posted by keep smilin

Dear Jeanie~

I am troubled by your statement..."you get to the point where you just want to left alone and play out the hand your have been dealt to the best of your ability".. My dearest friend..This where you and I do pick me up..This time I pick you up to say..yes..although these are our cards but admittably they are ugly..nasty.. painful cards..you are never alone in your fight..I will march, best I can right along side of you..hill and dale to see you thru..Dang cards.. I never was got at em anyways..

My story on this Dr. stuff is so disturbing also..At the time when my SCS implant was to be done..The Neurosurgeon insisted I wait for the smaller unit to be manufactured, as my stature is small and he felt I shouldn't support the unit available..so I was ok and patient with his feelings...8 months later, no unit yet!! I the mean time, this Dr. ordered an MRI to be done to map out space for the wires..Well..4 mos. after the MRI was done..my PM Dr. asked for the MRI results..at that time, we learned that my MRI showed a herniated disc in my back and the Neuro. never caught it..why?? Cuz he never read my results of the MRI scan...THEN the Neuro. asked me to come in the next day and literally ripped me apart for my results and RSD!!!!Included saying RSD does not spread... Needless to say..another Neuro. implanted my unit...and in record time..2 weeks later..ggrrrr!!!!!

Hugz everyone....

Kathy

Kathy,
This just shows how we have to be so vigilant and review our reports and doctors medical notes..it's unbelievalbe that the neuro didn't look at yuor MRI results!! Negligent!!!!
It also amazes me that potent meds are prescribed without delving into any of the patient's other possible health issues that may be contraindicated with the meds being prescribed..
such as meds that can compromise your kidneys or that can cause glaucoma or cardiac duress, or etc., etc. The meds are prescribed with out any probing. or necessary lab work, etc....
double grrrrrr.
I hope you have a calm and restful night!
hugs,
Hope4thebest

[dreambeliever128]

I just had this talk with an emailer. I went through so damn many Drs. trying to find out what was wrong with me, that I thought I had covered all of them in Colorado. I use to think CO had all the worse Drs. but they are widespread that's for sure.

I think it goes back to it being a illness that requires long term care, hard core meds, and high cost. IF the Drs. acknowledge it then they will have to try and help with it and they don't want to live with the patient basically. You have to be seen regularly to get the meds that you need. That's the law so they have to abide by that. It's like someone said on here, the Dr. said they'd have to marry them if they acknowledged the RSD and put them on narcotics.

I find it hard to believe that there is that much ignorance out there about RSD in the medical field.

As far as just being left alone and living with it. I feel that is close to impossible. It leaves a person to the possibility of depression and suicide if they don't have help getting the pain level down to where you can live with it.

There are good Drs. out there but with the RSD issue they seem to be so scattered. You just have to keep looking. It doesn't have to be a PM or a Neurologist. It can be any Physician that wants to help.

Ada

[bobinjeffmo]

One more story that scares the living death out of me. Please tell me, it wasn't really this bad - but I'm afraid it was worse. First, steroids only make the body feel better, but as far as doing anything for RSD there's not a chance in you know where that it will help much. Then to hear a person masquerading around as a doctor say that he's not even sure RSD is real, well I'm just blown away. Guess my Mayo's team are all just amateurs who got their degrees in a Cracker Jack box. The last time I heard the kind statement you just told about not believing RSD exists but if it did, you've got it came from someone who's autistic, but not a doctor. How can a person not believe but at the same time say you do have something? With all my heart, I'm so sorry you went through this day of living hell. Bob.

Originally Posted by firegirl

My primary doc called the neurology department to see if they had any ideas to help this flare I am in. Neuro doc said for me to take Prednisone & come in 2 weeks later to see him. I didnt take the Prednisone bc I've taken it several times with no results. So, my appointment was today. I wasnt expecting him to suggest anything I havent already tried or at least looked into. The doc's student came in first & said u definately have RSD & kept trying to give me a physical exam, which I am too sensitive for. Then, the neurologist came in. He said that "he's not sure that he believes RSD exists, but if it does, that is what I have". haha!! are you kidding me????? Then he starts saying, maybe you just have shingles (since April '07???). I had NO symptoms of shingles at all besides pain on one side of my body. He recommended I let him do another EMG....yeah right....way too painful. His other suggestion was that I should get a spinal tap done to see if there is inflammation at the rot of the nerves. If so, he would put me on a med for that. Finally, he gave me a PT referral (already had PT, OT, and aquatics). He made the referral bc I told him I didnt want the EMG & spinal tap. I brought up my concerns about the spinal tap leading to spread, but of course he said RSD doesnt spread!!! What a joke & a waste of time.....Not to mention, I am in horrible pain from the 2 physical exams.