Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 04-03-2011, 02:59 PM #3
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catra121 catra121 is offline
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catra121 catra121 is offline
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Quote:
Originally Posted by Swatgen27 View Post
I'm so sorry to hear that the appointment at the university did not give you the answers that you have been looking for. It took 2 years before I was diagnosed with CRPS and the waiting period was absolutely one of the hardest times of my life. It took the CRPS spreading throughout the whole lower body and but what finally made Dr's pay attention was at the 2 year mark my legs changed colors and became ice cold...absolutely boggles my mind as to how easy it was for alot of the Dr's to just blow me off in which in their minds I know they thought everything was in my head even though they left it unspoken, just the fact they blew me of was enough said...
Our intuition is usually spot on, and I too am having a hard time believing the cause of your new symptoms are stress related..
What tests have been run in the last 2 months? Is it possible that the CRPS is flared or has spread from the nerve blocks entering the spine? Has that been ruled out?
I would recommend trying to follow up with the pm dr that said you should be admitted ASAP. Sounded like that dr was on your side and was able to see that you are in need of medical care. I would definitly put that appointment ahead of your neurologist since he is at the end of his rope with answers. Is it possible that the nerve block has caused a small leak of spinal fluid? I have had a spinal tap procedure done and that caused a leak in spinal fluids which gave me the worse headache that I have ever had. Have the Dr's ruled that out?
Dont stop taking charge of your medical needs as now is the time that you have to fight your hardest. Please let me know if there is anything I can do to help.
Sarah
It's crazy...but I don't feel like the doctors have ruled hardly anything out. So far the only things that have been ruled out by anything other than an "I don't think so" statement are MS, brain tumor, lupus, and rheumatoid arthritis. After 2 months...that ALL they have ruled out. I have asked about all those other things like infection, CRPS spread, spinal fluid leak, menengitis, bone infection, any other sort of infection...and all I get are shugs or shakes of the heads saying "I don't think so." Sometimes they explain why they don't think so...but they have not run any tests and it is frustrating because a lot of those things could be causing some, if not all, of my symptoms.

But I am going back to my primary care this week to go over all these things again and to tell him that I NEED them to run these tests just to make sure. I have also added mild sepsis to the list because I have the symptoms for that (including confirmed MRSA and urinary tract infections) and it can cause hypoglycemia which would explain the rest of the symptoms including why my glucose level was so low when they ran the boodwork.

It is so frustrating. I appreciate all your suggestions and I am definitely going to be strong and pushy if that's what I need to be to make things happen. It helps that I am royaly POed at my primary care doctor right now. Don't think I will have the least bit of trouble standing up to him when at the moment what I really want to do is punch the man in the face for what he has done...holding his medical care hostage unless I go to the NUCCA chiropractor next door (who...btw...works for my doctor even though they have seperate offices). That's just extortion...ridiculous. So it's gonna cost me $460 to do something I think is a waste of time and money just so my doctor will see me again and actually treat me. But that's a seperate issue and once I am physically well enough I will defintely enjoy getting my medical records and walking out that door for the last time. The frigging doctor delivered me for crying out loud...I cannot believe that he would treat a patient like he has treated me during this situation...taking the opportunity to force me into a treatment that I do not want to do that he has wanted me to do since I was a child. Yeah...not going to have a problem speaking my mind to this man anymore.

Will keep you all posted on what happens next. Who knows...maybe this crazy NUCCA thing will be a miracle treatment. Not holding my breath on that...but anything is possible. I mean...if you believe everything they claim on the internet...this treatment can cure everything from MS to bed wetting to infertility...CRPS should fall in there somewhere, right?
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