Reply To: Droopy Face!

thanks so much dawn, I really appreciate it!!! Yea, as far as my presentation – it’s deifnetely not a straight forward case by any means- ugh, the last thing I ever wanted was to be a “complex” medical case!

They think, especially with the GI/diarrheal symptoms preceeding the neurological ones that it is some sort of atypical CIDP.. though I have my doubts.. especially since my reflexes are normal at times – I have been told at times they are decreased.. but also that they are hyper (but they have always been hyper).. I started with twitching in my right leg over 3 almost 4 years ago when I was pregnant.. I also had numbness in that foot, but honestly just thought – ah, it’s a slipped disc in my back or something like that.. never thought twice about it.. who knows if that is related or not to this whole issue though!

Yes, I had a skin/punch biopsy that apparently was pretty abnormal in all samples- I had three taken- foot, calf, and proximal thigh.. This, with the addition of the abnormal autonomic testing made them say it is defintely “inflammatory neuropathy or atypical CIDP”….

As far as other ideas (about being a hard stick etc).. I’m defintely open to hearing them! I was told by the first Dr I saw that he thought I had ALS.. with a 3 month old new baby and my daughter under 2 years at the time… I still have SERIOUS PTSD from that visit.. I still GREATLY fear it,… I’ve always been a rational person, but I just can’t shake that fear since that visit.. even though I have had THREE EMG’s and over 12 neuros say absolutely not! But when I start freaking out.. it is almost always that particular fear that is seeded deep down making me on the edge of a breakdown! So I welcome any thoughts/ideas on this whole thing!
THere is another lady at the infusion center who seems to have ALL the same symptoms as me – droopy face, slurred speech- she is getting 100 grams of IVIG every single week and it apparently worked GREAT initially and now is no longer working (after a few months).. we don’t see the same dr and her reflexes are apparently normal/brisk and has had one normal emg and all the others showed cidp..
no one has mentioned MMN.. everyone seems to think that my sensory symptoms throw me out of that diagnosis (apparently I fail their sensory/proprioception tests miserably). my CMV is now positive, which it was negative at the end of my last pregnancy. I don’t think anyone has checked EBV .. I was told I had mono when I was 15 though.

As far as Mayo goes I have defintely been thinking about it… Do most people go to their regional university health centers and then to Mayo when they can’t help, or do people usually go there when they haven’t yet seen a university specialist? I go to UT southwestern in Dallas. I have an appointment to see a rhuematologist on the 10th of april.. I am hoping maybe they will be like “ah ha, i know exactly what this is”! haha. but I know I shouldnt get my hopes up! I defintely wonder if I have Lupus- CNS lupus.. I have an aunt who was told she had lupus or some autoiummune issue that did affect her eyes as well.

I am so numb the past few weeks, and running my hands under hot water makes them tingle like crazy, and the joint pain is pretty intense! It’s all so strange! Thank you so much for your time, i really appreciate it!