very frustrated
 

I have been dealing with rsd/crps full body diagnoses since 2008. It is a worker's com injury, unfortionatley they are of no help at all. I am having to fight this on my own and pay for all my medication. MY question is if you have suffered brain shudders who did you find to help you? Doctors just don't seem tounderstand what is going on with my symtoms and maybe it is just rsd but there has to be some answers out there somewhere , right!? I am in so much daily pain, i never leave the house ,hard to get around. then when I have a brain shudder I lose my speech , my mobility, I fall a sleep. Don't lose consciousness but I can't speak, walk. Does anyone else have these symtoms?? Is this just the horrific stages of rsd that corrupt the central nervous system? thank you for anyone that has something to help me :(

I am so sorry to hear this. I don't have any experience with brain shudders as you describe them though have had some less severe cognitive issues with my RSD. Unfortunately I have been through so much bs with work comp and them not covering or approving things. They're job is to get off as cheap as possible and they don't care how you suffer. I have been using my personal insurance for the past 2 yrs on my work injury because work comp just stopped doing ANYTHING and I needed treatment. While the cost is high money wise...it's the best thing that could've been done for me health wise because I was in such bad shape. I know it's not a possibility for everyone to afford stuff but if you can...put your health first instead of focusing on what work comp SHOULD do because it doesn't matter what the law says or what is right...the only one hurt by it is you and they will never change. I would start with a neurologist myself with the symptoms you've described and I wouldn't assume straight off the bat that it's related to the rsd...they should check out all possibilities first before deciding it's the rsd.

What type of doctor originally diagnosed you with CRPS back in 2008?

I agree with Catra......it is a "Neurologist" that treats disorders related to the brain.

I would recommend you try to get an appointment with one. But with one caveat. Not all Neurologists are well versed in CRPS. If you can research a bit and call around and try to find a Neurologist that understands the sub-specialty of CRPS, that would be by far a better choice than a general Neurologist.

I wish you all the best. Can't imagine what full body CRPS must be like.

I agree so much. You need to see a neurologist or neurosurgeon. Either of the two will be OK.

Maybe call an RSD support group in your area and have them recommend a specialist to you.

Few doctors know about this disease, much less understand it. I “shudder” at any thought that you will be well served by the average neuro.

Mine has been unavailable due to illness for few months and in that time I talked to others in his practice. This experience leaves me worried, because my doc is very old. His colleagues knew nothing and kept referring me to another hospital, one that primarily treats children.

Fortunately, he recovered so I was able to see him this week. What a relief. He listed the temp variations found in my feet and hands, examined my limbs. He confirmed my “livedo aka LR.” In the 4 years I have been seen by other doctors not one took note of this, not even after I specifically asked about the web like pattern on my limbs.

I found him, only because pain management refused to treat my daily wake up migraines that are part of the pain symphony. I was livid that I would have to be treated by yet another doctor, but it turned out this doctor had recently studied CRPS and was well versed in updated CRPS info. I cried and sobbed with relief in his office the first time I met him.

You need to be very careful about the doctors you see. I was seen early on by a doctor who was at first pleasant and then suddenly became utterly horrible to me.

I had a classic presentation of CRPS, yet he could not diagnose me. I now know why. He is doctor who is a go to guy for the Worker’s Comp insurance companies. At the time I was seeing him he was involved in a CRPS lawsuit. Think about that. I had a classic presentation and he was in a CRPS dispute with another doctor, but he could not diagnose me.

My advice is join a CRPS FB group, ask for names. Send emails to known CRPS doctors asking for a list of local doctors who know about CRPS. Do not leave this up to chance, like I did. In the end I got lucky. Now I know better than to roll the dice.

Joining a support group is well worth the money, and I'm talking a real live support group (like RSDS.org).

I saw doctors off and on for over 3 years; all orthopedic surgeons, because I thought it all had to do with the initial injury - which it did, just not in the classical way I had thought.

Then out of sheer frustration, I went to my GP, whom I hadn't seen since the accident, because stupid me thought I was better off with the specialist care. How wrong could I have been?

He *immediately* upon seeing me drag my feet, sent me to a neurologist in the local hospital, and she diagnosed me on the spot just from the signs, symptoms and entire presentation of the disease in me.

Sometimes help can come from avenues you wouldn't have expected. Now my primary care is my GP and he will send me on - if necessary. I am sure of that.

I was DONE with all the orthopedists who refused to see or acknowledge that I was deteriorating before their eyes.

I wish you the best of luck in your search!

Your GP (!!!), Neurologists, Rheumatologists, and Pain Specialists. You need those 4.

I am in a worker's comp situation as well, but luckily I am in the Bay Area in CA, so the Dr's are more well versed in CRPS. SO I got diagnosed more quickly and got a good doctor. But while w/c isn't fighting the dx, they just fight every single treatment protocol, and deny that anything associated with the CRPS or the original injury is to be treated/considered (the increase in migraines, the back/hip pain from my walking being impacted and having to use crutches), the depression/anxiety, and the mental/cognitive issues.

And even with all that, I am still ending up using my health insurance for my medications because otherwise I wouldn't have any. Cause w/c just decides on their own you don't need it anymore. Or if you have to change doctors (like I did) they won't reapprove the medication (cause clearly if you have a new doctor you no longer need the medication you used for the past year, right?).

The place I've been lucky is my AME has been on my side, and made w/c get me things, and denied them doing testing that he felt was unnecessary and would be painful (that functional testing that they have made others here go through). I've been very lucky that I had a great lawyer who personally knew what doctors to go to and to have for the AME.
Three and a 1/2 years in... now I get to have a psych exam. In the getting ready to settle phase, I think?

However, I've never heard of brain shudders, and agree a neurologist needs to be consulted. Also, it could be a side effect of a medication you take, because many that we are given are anti-epileptics, which mean they cross the blood brain barrier, and could well have that kind of effect on you. Either way, it sounds VERY serious and something I'd hurry to my neuro for.