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.

Penguin;
A few things you left out. Did you have an injury? What started the onset of the RSD that you assume you have? Tell us more about your C 5-6 injury?
Your healthcare doesn't really matter much, although some of us may be able to advise you.
So, what's up? What's the biggest problem?
Diagnoses of RSD is tuff. Have you had it diagnosed?
It's a clinical diagnoses, i.e. rule everything else out.
So did they do that?
I hope so../ I hope not!
You don't "WANT" This monster!

However, if you do have it, GET TO AN RSD NEUROLOGIST ASAP!
THat's your ONLY Chance, for a cure!
DO IT NOW!
Start on Monday! Have appointments set up with a good neurologist set up by the end of next week! Don't take a NO!

My name's Pete, and you can PM me, anytime.
First things first, you need a Diagnoses!
Then, some preventative care!
(Which, many people here will help with, because I went 7 years with no diagnoses).
I've had Rsd, for 26 years.

I wish you well, I wish you all the best!

Pete
Asb

I know this is long....but i wanted to take advice and explain in more detail.
Did, I have an injury...that's a tough one. I initial hurt my left knee when i was 16, i'm now 28 and have had problems with my left knee since then and 2 suergeries on it. My C5-C6 (we think) i hurt it in a car accident about 8 years ago, I had them fused almost 2 years ago. Not long after the car wreck i started having what i thought were migrains, but were more along the lines of tension headaches, i had one last for 1-2months, then i went to a chiro and "crack,snap" later i could see vividly again and my head and neck no longer hurt. Well, over time as one could imagine things started getting worse and worse. Once, i fell out of my chair while i bending down to pick up a toy for my then 6-month-old. My legs had given out on me and "stopped working" meaning that they didn't want to listen to me. Also at this time i was having a hard time comunicating. I could hear everything you were saying perfectly fine, but it took me forever and a day to get my thoughts from my brain through my mouth, also had another one of those headaches. So i was rushed to ER and they did this test, that test and every test except for an MRI of my neck (which i told them to do). Well, everything came back hunky-dorie and i was written off as a mental-case b/c after a night of rest the symptoms got a lot better. Then about a year later all the same things happened, but this time it started in my right shoulder. I thought i had just slept on my shoulder wrong, b/c i had slept on the couch that night, but it kept getting worse and worse. My elbow, fingers, and shoulder blade were killing me, plus it was getting really hard to use my hand and my writing started to look that of a grade-schooler. I could barely move my neck, then it started into my other arm, then my legs started up again. One night I got "stuck" in the hallway because my legs had given out and i couldn't move, i had to "army crawl" my way to a phone. When I finally got into see the neurosergeon, he almost did the surgery that day (was a Friday) but instead he cleared his Monday calander for me and I had the surgery done then. Now, while my legs had stopped listening to me, they never really did hurt, sure was uncomfortable, but didn't really hurt, not compared to the headaches and my arms. Also, my senior year of HS my legs did the exact same thing (this was before the car wreck) so I don't know what the heck my legs are thinking or doing, but after I had the fusion of my C5-C6, my legs have been listening to me.
Now, what supposidly set off my RSD (if that is infact what i have) i don't know! I was doing housework and then all of a sudden my left knee started acting up....which is normal, but then it got worse and worse and by the end of the night it would not support me. Yeah, it hurt, but it mainly felt like it was just dead weight and "stupid." Went to doc, got referall to ortho, had an MRI which showed that my knee is fine, but that i have speckled replacement of marrow w/ fatty marrow. The ortho doc sent me to physical therapy (w/o even telling me what the MRI said ) which is where i found out what the MRI said. On the MRI it said that the bone marrow thing could be a sign of RSD. Went back to my regular dr and she said, yeah, you have RSD, and said that she would refer me to a pain managment doc and to keep up with the PT.
Cheif problem....i don't think RSD fits. I have read a lot of what yall have written, and yeah, i can relate to most, some of it....but not to the same degree that all of yall are experiencing all of this. Also, my arms are starting to act up again and I am being reminded of what it felt like when I herniated my C5-C6 (whichever nerve that is). I know RSD can progress, but it hasn't been that long. I honestly believe that my dr jumped the gun and hasn't ruled out really anything else. I think she just went w/ what the MRI-reader-tech person said it could be. So now i don't know what to do. It's not like i can just make an appointment with neuro or anything like that on my own. I am so confused and lost. I just want to know why i feel like i feel, cold, weak, painful, numb, tingly (and not in a good way ) and just plain wierd. Thanks for listening.

I am sorry you are facing this. I don't fit all the typical rsd symptoms but do have rsd. I did not have an injury either or accident. I am not saying you do or don't have rsd cause I don't know just of my experience. I also have PN and your symptoms sound like that as well or something similar. Have you ever had a nc/emg? What about blood work for auto immune issues? There is a PN board too you may want to look at though again I am not saying you have that. I would see if you can get into a neuro. I know you stated this is hard but is there any way to move things along?Did they set you up with a pain doc? I wish I had more answers rather then just thoughts

If you're not sure, please do get a second opinion. Then again... RSD isn't diagnosed lightly. Maybe more than one thing is going on? This really seems like something you should go see a doctor about... quickly.

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

Penquin, have you been checked for a type of migraine headache that produces stroke-like symptoms. You have some of the symptoms. You can Google it to read about it.

Hi Penguin,
Waiting for insurance to come through for any appointments is very frustrating...but as Pete suggested, maybe you can make an appt. on your own with a neurologist...or..there must be an army clinic or doc that you can see in the next few days who can help you speed up the process of seeing the specialists!!
Hope4thebest

Penguin,

I questioned my RSD/CRPS dx,too, each time I went to see my PM doctor. He confirmed the dx every visit, and told me that I need to accept this fact and learn to live with this culprit. My psychologist explained to me that I "say" I understand the dx to be true;however, my "need" to undo this fact is apparent when I question the dx.
As time passed, my symptoms became more obvious, as my body has endured a quick spread of this monster. I am not saying that you are in denial of your dx, I am sharing my experience in my denial of my dx. I have accepted this fact;however, RSD has not detoured me from living my life. I am not as active as I once was before the dx. I take a cocktail of many meds to ease the pain. My outlook on Life is held in high regard for the blessing of still wanting to be active again. Hope in a cure, or at least remission, is the blessing.

Get a second opinion, ease your worries. I do hope that you do not have RSD/CRPS. I am here for you.

Penguin,

Two main things to keep in mind:

1) Not everyone has a "precipitating event," like an injury. I have never figured out what I “did" to kick off my RSD. It is most common to have an injury first, but not 100% necessary.

2) Not everyone will have all of the symptoms or the same symptoms. That's one of the things that make this condition very frustrating.

A good many doctors do not recall having ever heard of RSD, much less to come up with it as a wrong diagnosis. You must present enough to him/her that he/she feels that RSD is what you have. As Marleen said, you can always get a second opinion. Go ahead and tell the doctor that is what you are going to do so you can get copies of your records, if needed. A second opinion really isn't the "insult" that some lay people think. Doctors like patients who are well informed and can be comfortable in their treatment routine.

Let us all know what happens, if you decide to do that.




Mike