HELP PLEASE!!!

Hi, I just wanted to share my experience with you guys.  I have previously posted on the MS forum and undiagnosed forum.  I have had so many different symptoms that I guess the Dr.'s just think I am crazy.  I have had numbness and tingling in my arms and legs, EXTREME pressure in my head at times accompanied by dizziness, muscle cramps, extreme fatigue, joint pain in my knees, low back pain, pain in my tailbone, electric shock like sensation down the back of my neck, my face stays flushed all the time, and many others.....  I have recently begun to have a substantial increase in blood pressure (it is not always elevated, but when it goes up it ranges from 150/90-160/100) and swelling in my legs. I have been tested for thyroid disorder, Lupus, RA, and I'm sure several other tests, all of which were negative.  I had Vitamin D test done and it was extremely low, along with SED Rate and CRP levels that were elevated.  Sed Rate was 26, and CRP was 15.  1 Dr. said this was rather high, and another said it was elevated, but nothing to worry about.  I have had a complete neurological workup, and all is clear except for abnormal EEG (about 3 years ago I had EEG done and it showed focal seizures) this time it was just abnormal.   I am at a complete loss and completely fed up with doctors around here.  I have researched many different illnesses and can't come up with anything that completely matches all of my symptoms.  My family is beginning to think I am crazy, but believe me it is real, and I am SO VERY TIRED of feeling this way with no relief and no answers. Any help, comments, or suggestions would be helpful!!  Thanks for reading!!

[dz56]

Good luck!  That's all I can say.  I have pretty much all the same symptoms, the electric shock sensations,  tingling/numbness, severe pressure pain in my head, high blood pressure and the thyroid problems and I've had them for over 30 years.  I was originally diagnosed with MS then that was changed to cryoglobulinemia (rare blood disorder similar to lupus). I tested positive for that for years but this year I tested negative.  Last week I tested for CNS vasculitis through a cerebral angiogram.  That was normal.    You might want to ask your doctor about that.  It's makes me mad that I've been through all these invasive tests and they can't find anything.

This is my suggestion.  Find one doctor who will listen to you then go to a big medical center/university where they do research and are versed in rare disorders.  You need someone who sees alot of things.

I'm trying to be rediagnosed now and it's not fun trust me and I know they think I'm nuts also.  I wish I never restarted the diagnosis process and wouldn't have if the cryo didn't come up negative this year.  The doctor that diagnosed my cryo problem years ago actually told me "I'm so glad this tested positive because I thought you were nuts".  Good luck

[dz56]

Good luck!  That's all I can say.  I have pretty much all the same symptoms, the electric shock sensations,  tingling/numbness, severe pressure pain in my head, high blood pressure and the thyroid problems and I've had them for over 30 years.  I was originally diagnosed with MS then that was changed to cryoglobulinemia (rare blood disorder similar to lupus). I tested positive for that for years but this year I tested negative.  Last week I tested for CNS vasculitis through a cerebral angiogram.  That was normal.    You might want to ask your doctor about that.  It's makes me mad that I've been through all these invasive tests and they can't find anything.

This is my suggestion.  Find one doctor who will listen to you then go to a big medical center/university where they do research and are versed in rare disorders.  You need someone who sees alot of things.

I'm trying to be rediagnosed now and it's not fun trust me and I know they think I'm nuts also.  I wish I never restarted the diagnosis process and wouldn't have if the cryo didn't come up negative this year.  The doctor that diagnosed my cryo problem years ago actually told me "I'm so glad this tested positive because I thought you were nuts".  Good luck

[mommy822]

My 28 year old son was told the same crap by physicians he is now suing, he currently has late stage biopsy proven necrotising CNS Vasculitis (and has had several strokes)! He probably won't live long enough to see the money!  
I recommend you run not walk as fast as you can to a center that specializes in this condition, it is a cruel fatal disease if left untreated.
If you are in Canada go to the Ottawa General Hospital, just go to emergency department, get reffered to a neurologist, they are currently doing ground breaking treatment for CNS Vasculitis using a stem cell treatment protocol from the Fred Hutchinson Center in Washington. If you are in the states go to the Hutchinson Center or Cleveland Clinic. There are treatments that will help you if you get help early enough.
My son saw maybe 20 doctors before he found one that believed he even had a serious condition (the bad ones are named in the lawsuit), they kept telling him he was imagining the pain and gave him adivan (even after he had classic strokes).
His current nuerologists and rhuematologists have tried many treatments including the John Hopkins protocol...he has not gone into remission yet because it took too long to find a competent dr. who would refer him to a nuerologist...so the treatment looks too late for him. I emplore you do not hesitate to find a good doctor. Anyway my point is don't listen to the nay sayer idiot doctors...keep going till you find one that knows what he is doing.

[squirtatious]

Have u thought about seeking alternative help through a licensed foot zoner or irodoligist to determine the root cause of ur symptoms?