Hi everyone, I've been MIA for a while..sure missed all of you.
 

Hello fellow RSD'ers, I have been working really hard trying to get the best doctors and treatment for the past month or so. This has pretty hard to do for some reason. Half the pain doctors and head shrinkers here don't know what RSD is. One of my doctors thinks I might have MS on top of my RSD. I am having an MRI of my brain tomorrow morning. I was wondering if anyone else has had their doctor ask them to have a brain MRI because of some of your symptoms and voice concern that you may have MS on top of your RSD? I sure hope everyone is doing well. It's really good to be back on here...I've missed you guys. :circlelove: Karen

welcome back!

I just had the MRI of head, plus CAT scan of head a couple months ago. My neuro said I am to old for MS, but my family doc said there are always exceptions, so she ordered it. I am 53. As I understand it, MS usually starts earlier in life. Both my scans came back unremarkable.

I have been having dizziness, feelings of being stung, the electric RSD shocks in my back, as well as some balance issues. A few months ago, I noticed the redness at the top of my back and on my neck, then quickly it spread right down my spine. It is red about 14 inches down and 4-5" on each side of my spine. So **I** think all the odd neuro symptoms are because the RSD has spread over or into my spinal column. I go to my "RSD" doc tomorrow, will see what she has to say.

I find MRI painful since having RSD. I guess it is the vibration as the pulses go through me. I have heard other people say it is not painful that have RSD. I don't normally take narcotics, but my family doc gave me dilaudid and also ativan to take during it. That really helped.

Best of luck to you on the tests!

When my RSD spread after a block at the end of January this year my pain doc referred me to a neurologist because of all the weird symptoms I was having: blurry vision, dizziness, nausea, loss of balance, tremors, and a host of other things as well. I had to go for an MRI of my brain to check for MS but it came back normal. Then I was bounced around from one doctor to the next as they tried to figure out what was wrong with me. Final conclusion was (as I feared and expected) that the RSD had spread and gotten worse.

But all of the doctors who bounced me around (PMs, neurologists, rheumatologists, infectious disease doctors, chiropracters, etc) did not know that RSD can cause these things. To be honest...in the beginning neither did I...but I knew the pain that I was now having was likely spread of my RSD so while I was researching spread and all the other symptoms I had I realized that these can ALL be caused by RSD. I am happy we ruled out all the other stuff of course...because RSD can cause all sorts of weird stuff but if you just assume it's the RSD you could miss something huge like MS and not get it taken care of until it gets worse.

My PCP that I am seeing now was the first and only doctor who agreed that the symptoms were related to RSD and the spread of my RSD after the block I had in January. She is very open minded and willing to do the research necessary to help me overcome these things. She is also willing to look over anything that I find to see if it is something worth trying.

Finding the right doctor is a real pain...but totally worth it once you do. Even though your symptoms could be caused by RSD it is important that you get all the other stuff ruled out that could also be causing the problems. MRIs are terribly painful for me now with RSD...I agree that it's probably the vibrations and sounds that cause it to be this way.

I'm having a MRI too after my neurologist saw swelling on the side of my head along with the same side face drooping. I was told it was more for ruling out any brain invasion of RSD and it would show that my RSD has spread to another neuro-path.
Karen,WB. I hope your's goes well....:hug:

I didn't even think of the fact that an MRI might be painful now. I know I'll get through it, just does not sound like it will be much fun! Thanks for your insights everyone. :)

Let us know how it goes...:hug:

Hi Karen,
Welcome back. Sure missed ya. When I was first diagnosed with rsd I had a wc doc want me to get a mri of my brain to rule out ms. I went into her office on crutches and in severe pain and when she said that I said to her "Don't you think if it was ms that I would have gone to my family doctor by now? I did not have any symptoms of ms ever until my injury. I think I had four or five body parts mri-ed. The other doctor said I didn't have to do it if I didn't want to have it done but then he said it would cost them alot of money to do the testing (mri and blood work) so why not get a free checkup. If it is negative then you have nothing to worry about. So I had it done. And bingo no ms...just lovely rsd;.)

I agree like stated above that it is good to get things ruled out so as not to overlook something major like ms. I try to use meditation during mri's which helps a bit. I try to calm myself down and rest or nap a bit. Usually it takes me the entire time to relax and I am just about to fall asleep when it is over! They do have earphones and with quiet calm music it makes it more bearable and takes away some of the sound a bit. Maybe they could turn on a radio station you like or bring a cd that they may be able to use. Anything that would help you. Oh, and a light blanket for your legs is always good too. Best of luck and let us know how you make out.
kathy d

Thanks Kathy, missed you too! I had the MRI yesterday and got through it ok, but the I.V. they put in my arm for the contrast dye hurt like crazy. My RSD has spread up my right arm and before I could stop them, (I was still 1/4 of the way in the machine) they put it in my right arm. :yikes: Now it's just hurry up and wait for the results. It's really nice to talk to you again!:hug: Karen

My brain MRI was normal. :) Thank God! Thanks so much for everyones support and well wishes. My neurologist did tell me that he believes I have RSD and Peripheral Neuropathy. I have been reading up on PN and it really seems a lot like RSD in some ways. I guess I need to post my questions on the PN section and see how other people deal with PN...what helps and what makes it worse. Thanks again for everyones *hugs* and just all around being so wonderful to me. K.

That's a relief...so happy to hear that it's normal. I know that doesn't make what you are going through any easier...but I know when I had mine and it came back normal I was reminded that as bad as things are...they can always be much worse. So it was a relief to know that at least we had ruled out some very serious things with the MRI of my brain.