Hi Kelly! I have Systemic Lupus

June 9, 2009 at 6:28 pm

Hi Kelly! Unfortunately I have the Systemic form of Lupus which attacks the organs and any other part of the body it wants to attack! Have had MRI’s. EMG’s, Spinal taps you name it I have had it! Labs to the point that I am sick of them!

My Lupus by what Duke Medical Center and after seeing 3 different Neurologist claim that I have CIDP but the pattern of nerve damage I have is a Small Fiber from the Biopsies! Chronic Inflammatory Demylinating Motor/Sensory Polynreuropathy but it too has often effected the large fibers also by what my biopsy read. Attacking motor nerves and sensory nerves! After we talked yesterday I wanted to know what kind of CIDP this was because so many I talk to are getting IVIG and I wanted to know why I was not getting it! So he explained everything to me! My attacks though on my nervous system almost acts like MS. Constantly attacking me over and over again! I was diagnosed many years back with CNS Lupus where it attacked the brain and spinal cord! Was in the hospital 2 months with that attack. But this kind of nerve damage has been totally different and rather painful in nature! The nerve damage ended up going into CIDP but caused by Lupus.

Now I have CIDP and Myositis. Lupus is attacking my muscles. And the CIDP is attacking my nerves! Right now I am seeing a Professor of Rheumatology at Pitt Trauma Center. By what I have been told he is one of the best Rheumy’s they have around in NC! Yesterday was my second visit with him after being tossed around so long with the Neurologist!

CIDP is a definite diagnoses. But now I also have Lupus Myositis along with having CIDP. I have both going on with me right now! The Myositis just started acting up these past two weeks. THe CIDP has been there a while.
I started getting leg cramps and weak feeling muscles two weeks ago and it felt different from CIDP!

But at least I am getting treatment now! All the patients that I have talked too so far in his office waiting to be seen by him all give him high reccomendations! Have heard some stories from quite a few patients of his and they all have given him an A+++ of a doctor!

Kelly! I stay sick alot! I’m surprised I have lived as long as I have with this disease with all the problems it has given me! I have seen hospitals so many times it’s no joke! Hope this answered everything!

Yes! I am a confusing patient! Been a hard case to figure out too! LOL! Hugs
Linda H