awwe…geez, I have no clue anymore.
So I have a B cell dysfunction as told by my immunologist. Also WBC has dropped below normal. I requested a bone marrow biopsy. Hemo/Onco says he does not THINK it’s Lymphoma,Myleoma.
He feels its an autoimmune issue.
We shall see…I’m still seeing the GI Dr. just to get a baseline and ask to have basic testing done.
Ive been through the mill and back. I also have a EMG next week as well to help with the diagnosis of my “progressive sensory neuropathy”. then I will have another spinal tap!
I would really love to just get to the source of all this! Is the Immune issuse causing the CIDP?? If so, then I hope there is treatment for the immune issue that will help with the CIPD.
MY FEET HURT SO BAD! I FEEL LIKE IM WALKING ON TINY SHARDS OF GLASS,MY FINGER TIPS ARE CRAZY! SOFT HAIR…A PERSON OR ANIMAL FEELS LIKE SANDPAPER TO ME!
IM SO TIRED,STAIRS HAVE BECOME MY ENEMY! THIS IS BEGINING TO CONSUME ME 24/7. IF I AM ABLE TO SLEEP, ITS FOR 4-5 HOURS THEN I END UP AWAKE THE REST OF THE NIGHT INTO THE NEXT DAY. A FEW DAYS OF THIS AND I BECOME EVEN MORE IRRITATED FROM LACK OF SLEEP. I CHECK OUT BOOKS FROM THE LIBRARY TO LEARN EVERTHING I CAN ABOUT ALL OF THIS,YET IM STILL SO LOST. THIS COLD WEATHER HURTS ME DOWN TO THE BONES!!!
I MUST GET ANSWERS , I WILL FIGHT THIS AND WIN!!! I WILL…NOT FOR ME,BUT MY 6 YR OLD WHO “MISSES HIS OLD MOMMY”!!!
PLEASE PLEASE…SAY AN EXTRA PRAYER FOR ME, OR AT LEAST MY SANITY!
Thanks for your support,because NOBODY else understands.
I think your doctors are trying their best. They gave you high dosages of IVIG with a tentative diagnosis. Some doctors would have waited for more diagnostic information, but your doctors recognized the urgency of your situation. Given that you need IVIG for your immune deficiency and the fact that it's relatively safe, their decision seems sensible. However, they probably need more diagnostic information to try many other medicines.
Coincidentally, I'm scheduled for a bone marrow biopsy on November 21. My immunologist is concerned about the possibility of lymphoma because I had swollen lymph nodes during my last examination. Lymphoma is unusually common among PIDD patients. Interestingly, he told me that if precancerous B-cells are detected (I believe he means cells with genetic markers associated with lymphoma), he would prescribe rituximab to prevent lymphoma from occurring. I would like this to be the case as rituximab has been shown to be successful in treating a number of autoimmune diseases (CIDP, rheumatoid arthritis, immune thrombocytopenia purpura, etc.). However, it has potentially serious adverse effects, especially for immune deficient patients.
Regarding your diagnosis, a nerve biopsy might be helpful. See the abstract of a paper entitled "sensory CIDP presenting as cryptogenic sensory polyneuropathy," which was co-authored by my neurologist (Dr. Latov). The URL for the abstract is: http://www.ncbi.nlm.nih.gov/pubmed/15363060
Ugggh So today Im told its MMN. but that does not address my balance,coordination,and gait issues. So confused. IVIG is being up to 80g every 2weeks. So…we shall see! Dr says go back to work But he forbids me to drive!/%&% I have a bone marrow biopsy tomorrow to determine why
My N cells are out of wack. Neurobsays MMN is not due to autoimmune but everything I’ve read says it is. IM SO FRUSTRATED!!!