Ok folks, I am running out of options. The rheumy says my seronegative ra is under control because my labs are good. My hips and knees may be as good as they are going to get. They hurt but I guess I can deal with them. I can walk short distances with a slight lip and have a hard time getting up and down.
The big problem remains my hands and feet. They SCREAM pain almost constantly and swell and turn red. The rheumy said neuropathy. Saw the neurologist who did an emg and preliminary results show some carpal tunnel and nerve damage in the ankle I hurt a couple of years back. My scores were on the low side of normal but not enough to get the dx of neuropathy. Still, they upped the lycria to 100mg twice a day and I see the neuro doc next week as well as the rheumy.
Of course the neuro people are saying its up the the rheumy and the rheumy is saying I'm fixed. When I hurt my ankle a few years back and developed reflex sympathetic dystrophy they did a series of 8 spinal injections to sort of flip the breakers going to that foot to reset it. I think they can do that for other problems as well.
Since they don't know whats causing the pain, I am thinking of trying this. Anyone have any experience or knowledge on the subject of spinal blocks for extremity pain?
No one at all has any info or heard of this procedure?
I've heard of it, it was on an episode of the Discovery Health Channel's Mystery Diagnosis. They did a segment on a woman with reflex sympathetic dystrophy and, when she was finally diagnosed, she was treated with spinal blocks.
Sounds like your between a rock and a hard place. Can you find a more open minded Rheumy? Or a less passive Neuro?
Link to the National Pain Foundation's treatment options page: http://www.nationalpainfoundation.org/MyTreatment/default.as p
michele, I don't have any info other than to say that you need second opinions for both the Rheumy and the Neurologist. My Neurologist didn't do any tests except for the essential neurological exam. In my case, he didn't say it mattered, my symptoms and my history pointed to the same kind of treatment.
First, he treated me with Neurotin which helped significantly with the pain, but in my case increased the tremors. Then, he put me on Bacoflen which turned down the volume on the tremors. For the pain, they are trying morphine. Both my primary and my neurologist are convinced I have neuropathy. So, this neurologist saying you don't have it and your rheumy saying you don't have RA just baffles me. It doesn't sound like either of them are being good diagnosticians.
Since there is some risk to the spinal blocks, I think it is too big a step at this point in time. I believe you have a lot of other options to pursue and need to find doctors that are willing to work for a solution and not just blow you off.
It really upsets me that you are getting treated this way. Sorry I didn't reply before but didn't know then what to say. You've been through so damn much.
Also read Doug's description under pleeeasse help about diagnosiing Reactive Arthritis. Maybe it will help give you some clue as to what to ask for or who to see.
I thoroughly believe that something is wrong and needs treatment. Getting spinal blocks is not going to correct that. That is an option you take when there is no way to correct a pain problem. They haven't done enough for you.
I'm sorry this is such a battle and an ongoing grief for you. But I know you deserve better medical care than you are getting.
Also if the pain and symptoms are not under control, then how can the disease be. My bloodwork is fine right now but my joints hurt horribly today. I upped my prednisone to compensate because it was so bad. I think the tremors triggered a RA flare. They have got to get this under control. Don't let them tell you no. Make them talk to each other on the phone or get second opinions. You deserve a better answer.
Thanks girls. I am just not sure what else to do at this point. I am on my second rheumy already, seen an internist, a gi guy, a crohn's specialist, a neuologist and done more physical therapy than I care to think about. That's all on top of the zillion doctors I saw for the fertility issues. Oh and an infectious disease guy.Michele, early in my diagnosis, I went to doctor after doctor and none of them seemed to know what to do. Finally, I ended up in the hospital and I begged my Cardiologist not to send me home until he put me in touch with someone that could help me. Bless his heart, he did so and that's how I met my first Rheumy.
That's what you have to do with these docs. Tell them that you expect as experts that they can help you find the answer. It is obvious that something is wrong. Don't let them play it's this doctor's job or that's doctor's job. Ask them to take some personal responsibility in your case and not leave you hanging out there.
The only other option I can think of is to try a Universtity Medical Center or a Mayo Clinic where they have a group of specialist look at you for a solution.
I know you are so frustrated and discouraged. But there has to be an answer and someone has to know it. Keep trying.
You've gotta find a Pain Specialist.
http://www.nationalpainfoundation.org/MyProviders/default_se arch.asp
(PS - I went through four Rheumys in two years before I found a keeper!
Hang in there...pain is very overwhelming.
i dont know if this is what you mean, but before surgery I got a nerve block that blocked pain from the elbow through the fingers. It was uncomfortable not to have feeling. The block was administered to the nerves through my neck