[catra121]

Saw a neurologist today for a variety of wierd symptioms that I have been havubg after an LSB. My vision is bad so I apologize for bad misspellings. But I asked him if the hypersensitivity in my back/nck that is spreading could be a spread of my RSD because it is accompanied by burning pain (lord I hope not but asked the question anyway).

But he said to me that RSD does not spead. He said you get it in one nerve and if you are unlucky you may get it in another nerve...but it does not spread. He said my pain doc in 2009 may have "jumped the gun" with the diagnosis but that RSD does not "spread" ever so that;s just a myth and I shouldn't worry about it,

I think this may be the right guy to handle my other symptoms that I am having regarding these things that I have after the LSB...but his comments about RSD concern me. Has anyone ever heard of this? I though the spreading of RSD was fairly common based on what I've read. Does that sound right to anyone else?

[Rrae]

Oh THANK you!
You're gonna get some great feedback from our RSD friends.

I have a hunch there's gonna be a bunch of people disputing what this doc is telling you.....
I wanted to start a thread asking about the spreading of RSD, so I'm very glad you did this.
I'll be watching real close!
I have similar issue to what you describe and am going to my Dr on Tuesday.
I have a feeling he won't know much, so I knew I can count on this forum....

Bring it on my friends!
This is a great question!

Caring
Rae

[SandyRI]

RSD spreads.

Its a total bummer. But it spreads. Check out RSDSA.org. There's plenty of scientific literature on the subject.

Sounds like your new doc is not up to snuff on the subject of RSD. You may want to start searching for a new one. Look for a board certified pain mgmt doc or anesthesiologist at a good quality teaching hospital or large university. Is there a large city near where you live? If you search older threads on this board you will find other posts on the subject on how to find high quality docs.

The best of luck to you. I highly recommend finding a doc that administers ketamine infusions for your RSD. A list of ketamine providers is available on FB at "ketamine klub" or from Jim Broatch at the RSDSA.

XOXOX Sandy

[catra121]

This guy I am seeing now is a neurologist and am seeing him for what I believe are non-RSD issue...it was just something I asked because the spreading hyper-sensitivity and burning pain I was afraid was RSD related. I have so many issues right now that I don't know what is what and I think/hope he is the guy to deal with the other issues,

I was just shocked at his "convincing" statements about RSD not spreading because I HAVE read just about everything I can get my hanfs on about RSD and that includes this board and I have just never seen anything that says it DOESN"T spread. That just sort of shocked me, But it't not his specialty and it;s not what I am seeing him for so I'm not too concerned....yet...

[RNcrps2]

Catra121, I dont know about you but when i went thru it it was so upsetting. I had a nerve injury and had surgery by a well known ortho Dr. When my burning and pain spread he was in such denial and finally sent me to 2 pain specialist who said it was CRPS2 which had spread. I respected him but it was so upsetting that he was so ignorant to facts about RSD. I went on to see 2 RSD experts and it had spread to "generalized RSD"(spread from arm to leg-leg-arm to face and scalp...) I did take articles in about RSD spreading and finally i took in photos of my extremities turning purple and swelling that he finally admitted that that he agreed i had RSD. To me it was so frustrating because i knew what my symptoms where but he made me feel crazy. Although he finally agreed he still was ignorant enough to say dont worry it will burn itself out.
There is plenty of articles about RSD and spreading and that it does not burn itself out. Hang in . momof4

[debbiehub]

Get a new doctor! Run don't walk,,,,,

Debbie

[DeesRSD]

well being as Im not in the best of moods lately, I hesitated to respond but respond I must. RSD does indeed spread, and like mentioned by others, there are a great many articles, testimonies, and quite a few doctors who will attest to this. If your neurologist would like to actually speak to one of the best rsd docs in new hampshire, let me know and I'll hook you up with the number, Ive got one in LA who would also gladly educate the neurologist as well.

My RSD started in one hand, then the next. Sprained my ankle and bam, got it there as well, mirrored over to the other as well. Have C4-5 disc bulging and bam, RSD now there. Ulcers, borderline glaucoma, kidney stones, and the list goes on, all since getting this in my hand so many years ago.

If this doc does okay by you for your other issues then thats cool, but if he is so closed-minded or refuses to see the writing on the wall when it comes to RSD, like others have said, I'd be finding a new RSD doc asap.

Please take care of yourself and if my post came off sounding um bytchy, please please forgive me as that was not my intention, just having a real chitty time of it lately k

hugs
dee

[keep smilin]

Originally Posted by DeesRSD

well being as Im not in the best of moods lately, I hesitated to respond but respond I must. RSD does indeed spread, and like mentioned by others, there are a great many articles, testimonies, and quite a few doctors who will attest to this. If your neurologist would like to actually speak to one of the best rsd docs in new hampshire, let me know and I'll hook you up with the number, Ive got one in LA who would also gladly educate the neurologist as well.

My RSD started in one hand, then the next. Sprained my ankle and bam, got it there as well, mirrored over to the other as well. Have C4-5 disc bulging and bam, RSD now there. Ulcers, borderline glaucoma, kidney stones, and the list goes on, all since getting this in my hand so many years ago.

If this doc does okay by you for your other issues then thats cool, but if he is so closed-minded or refuses to see the writing on the wall when it comes to RSD, like others have said, I'd be finding a new RSD doc asap.

Please take care of yourself and if my post came off sounding um bytchy, please please forgive me as that was not my intention, just having a real chitty time of it lately k

hugs
dee

A Dr. (or individual otherwise) who says "RSD does not spread" is indeed a Dr. or individual who does not suffer with this mean, relentless disease.. They need to go back to the books to learn more and to listen to their patients a bit more attentively!! We do suffer from RSD and we know best how we feel!! It spreads!

Sorry for your fustration and dang pain!!

Hugz, Kathy

[finz]

Maybe there is a miscommunication with this new neuro.....he said it doesn't spread but it can show up in a new nerve. Maybe he was trying to say that RSD normally doesn't spread like a rash, slowly creeping over a larger surface area......it jumps to a new area/new nerve.

Or........maybe he's just a moron

[catra121]

Originally Posted by finz

Maybe there is a miscommunication with this new neuro.....he said it doesn't spread but it can show up in a new nerve. Maybe he was trying to say that RSD normally doesn't spread like a rash, slowly creeping over a larger surface area......it jumps to a new area/new nerve.

Or........maybe he's just a moron

I'm thinking moron at least as it pertains to RSD. Since I am currently having hallucinations, double vision, blurry vision, uncoordination and a variety of other off things...I certainly hope he is not a moron in his own field. But I;m giving him the benefit of the doubt on that one because at this point I have to rely on others taking me in for testing and doc visits and all and he seemed like maybe he had an idea of what may be wrong with me (this new thing and not the RSD) so maybe he's onto something. Maybe I need a fresh set of eyes to treat the non RSD thing and maybe...hopefully...he's the one.

But he was pretty clear that RSD does not spread from one location to another ever...that each occurence of it is something new and that it is rare for it to appear in another nerve. Just wanted to make sure that I wasn't crazy when I thought he was crazy. It's obviously NOT his specialty. I just hope he's good at what HE does...lol!