Still questionable issues

March 7, 2011 at 1:28 pm

[I][SIZE=”1″][SIZE=”2″]Elmo, & others

thanks so much for your help. I’ve just re-read all the blogs about applying for SSI & I am now “Once again” under a NEW Dr’s care. I saw another specialist last week, a Neuromuscular ” doctor, WHO after doing the nerve / muscle conduction tests, just blatently blurted out ” you DO NOT have CIDP”, and you can imagine the SHOCK on my face. That after 9 yrs of being sick & dx in 2003 with GBS then progressed into CIDP, taking IVIG for over 5 yrs, numerous , numerous other issues. I now feel very very depressed that I’m back @ square ONE. I definitely have lower extremities weekness, & peripheal neuropathy, but because my arms/ hands did not indicate a weekness/ numbness & my reflexes returned back to normal. She said that there was NO way I had/ nor ever had CIDP. I’ve had a plasmacytoma in 2002/2003, along @ the same time as the GBS diagnosis, and she’s trying to tell me that she believes it is due to a spine issue. My question is this, is she trying to say that @ the same time, I had THREE diff things wrong / me. GBS- clearly diagnosed with spinal tap. Plasmacytoma in the left femur bone/ had radiation done to it. & then ADD in spine issue that has caused muscle weakness/ numbness ONLY in the “below the knees” numbness. My husband & I both agree that IF this was due to my lower back/ lumbar area, wouldn’t I have dumbness / weakness from the tailbone area / hip area DOWNWARD. And NOT only in the below the knees area. I’m so darned confused now that I could SCREAM………… I’ve just read a whole lot of blogs from other people that have been misdiagnosed for the past 10 yrs of more. What is going on here ? Can they NOT make a definite diag of this illness. ALL my other dr’s & there have been many. Have NEVER said anything to the affect that I did not / nor ever had CIDP. Now she’s wanting to run me thru a whole bunch more tests, expensive tests.
Any suggestions out there ?