Quote:
Originally Posted by Penguin
Hey all! Hope everyone is as well as they can be tonight. Well, i guess let me get to the point. I am beginning to wonder if i was misdiagnosed. First off, from what most of you have told, getting a RSD Dx usually takes awhile and after a bunch of tests are ran. I had an MRI and my blood work was done, about a month or 2 before the MRI (B4 any symptoms). My doctor (whose is actually a PA) basically Dxed me from the MRI (the speckled replacement of marrow w/ fatty marrow), the little bit of swelling i had, the slight discoloration, some temp change, and the pain. However, the pain is not burning really, it's like a deep bone pain w/ the occasionaly pins and needles to where i feel like a pin-cushion from the inside out. Now, my foot falls asleep if i am sitting more than 5 min, my "good" leg's foot also starts to feel "sleepy" it i have it bent for too long, also both of my hands are starting to get it also if my elbows are bent for too long (and i ain't talking 30min either...10 at the most). My hands and arms are starting to seriously remind me of how they felt when I reputured my C5-C6 disc, plus i'm getting the numb, tinglies, light-headedness in the back of my head again. Also none of my extremities feel like they fully want to listen to me, they are sluggish. Granted, last time it didn't start in my legs and this time my legs work....but i don't know what the hell is going on. My husband is army and so I have to have military healthcare, which means waiting forever and a day for any and everything. Does anyone know what these symptoms/sentations could indicate? I am seriously thinking about getting another opioin...as soon as I figure out how i can do that. Thanks ever so much in advance. |
Hi penquin,
I'm so sorry you are having all of these symptoms. I was 4 years before being diagnosed. But when I was, the orthopedic Dr. did it in less than 1 minute. By looking at my hand-then sent me to nuclear med. tech at the hospital that confirmed RSD. He started me in physical therapy next day. I had been misdiagnosed with RA. I knew that was wrong as my rheumatoid tests said negative. I flew to a sports injury group of orthopedic doctors a couple states away. When I came back to Arizona, saw a neurologist-more tests with confirmation. Then saw an orthopedic hand specialist, confirmed and he started me in therapy. I am partially paralyzed in my hand-delay of therapy. But I can life with it, can cut my own food, dress myself etc.
I have a friends with MS for a long time and now added RSD to it. So there are multiple issues with some.
RSD affects our bones, that's why the nuclear med test. The dye shoes up the bone loss etc. Have you ever had the x-ray with dye? When I saw the Arizona hand specialist, he immediately knew also. There is a motley color, redish, bluish, whitish combination of color. RSD is a autonomic disorder. That's why the circulation problems, sweating, ice cold. It affects the involuntary organs, heart, bladder, lungs, etc. RSD also affects the Limbic part of our brain. We are talking and we can't grasp a word that is common to us. So our speech can be slow, forgetting a word while we are talking. Feels like we are in the slow speech class. Our blood pressure goes high then low, because of the autonomic disorder. I've passed out from low blood pressure. A lot of us have skin eruptions, red dots. Sun isn't good for us. I get rashes, 2 lesions. If you lay in bed and hand one foot off the side, for a couple of minutes, does it get bright red and change colors from just hanging it off the side? Seeing a neurologist knowledgable in RSD is important.If you go to RSDSA (national organization) and under Support, push that and it has a place to put your zip code in. It will give you a name and phone number of the closest RSD support group. Call them, you can go to a meeting or just talk to some of the members and get some names of RSD informed people. I believe in the military, you can get special permission to see a Dr. off the military list. If you find a RSD specialist, ask for that permission. If you tell us what state you are in, there may be someone on here that knows a Dr. close to you. There is a RSD meeting tomorrow in South Carolina- I was going but too sick with chest infection. The antibiocs aren't working fast enough. I cancelled yesterday. Those meetings are wonderful. I attended the annual RSDSA meeting here in Scottsdale, AZ in the spring. We had 135 Saturday and Sunday was for the medical professionals. 50,000 people each year are getting this. More and more information is getting out there to the Doctors, hospitals, but still a LONG way to go.
Sorry, can't help you more. I've had this 14 years and now full body. But I did have 2 remissions of over a year each. I'm doing better than I was 5 years ago, because of a very good Dr. and his trying different meds. etc.
Let us know how you are and what you find out. Try for an out of system neurologist? Just calling around and inquiring about RDS with Pain Specialists Groups can bring up knowledgable Drs. Take care, loretta soft hugs