Ok, for those of you who have read my previous post. First I had idopathic cidp, the yes for sure cidp.
no response to ivig...new dr says its a rare sensory form of cidp, then after emg & nerve conduction decides its mmn. he wants to up the dosage of ivig.
I also have CVID....(Immune system is weak) Low IgA & IgG. B cell dysfunction.
When I asked neuro if this new dx of mmn is immune related he says no.
Well...looking into mmn there is no mention of my sensory issues (the worst ones to me) loss of balance,everything feels like sandpaper to me, i feel like im walking on glass.
N ow these symptoms are mentioned in madsam!
IM SO FRUSTRATED.....I JUST NEED A CORRECT DX!
I GO FOR A BONE MARROW BIOPSY TODAY AT 9AM, I WOKE UP AT 1:30AM AFTER JUST 3.5 HRS OF SLEEP. THIS IS USUAL AS I JUST CAN NOT SLEEP WITH ALL THIS STRESS,NOT TO MENTION I TAKE A HIGH DOSE OF MEDICATION TO HELP ,E SLEEP!
DOES ANYONE HAVE THOUGHTS,CLUES,SUGGESTIONS??
Also, I asked about going back to work eventually,he says yes,by 3 months I should see improvement with higher dose ivig....BUT he forbids me to drive. I have no income and unless he qualifies me for SSD, I will probably be without health insurance by the new year. so this is frustrating as well!!
PLEASE...SOMEBODY SEND ME HOPE!! IM DESPERATE AND ONLY MY FRIENDS HERE UNDERSTAND WHAT IM DEALING WITH.