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View Full Version : New to lupus....sigh



mitwit
05-27-2005, 04:11 PM
Hello all,

I was treated for MS for a year and then UNdiagnosed of MS, and now another year later , have an SLE diagnosis.

I have a question, as I am not getting clear responses from my docs, good as they are. Does this sound like lupus...I have been weak, and shaky, and tremory, and so tired I cannot function, with pain pretty much widespread . I began taking Cellcept two weeks ago, and somehow wonder if that could have flared me up, yet I was beginning to feel bad before I started Cellcept.

Any info would be a blessing for me. I am quite frightened by all this , and I wonder when this awful feeling will lift.

Thanks, Mitzi

madthumbs
05-27-2005, 06:48 PM
You should elaborate on symptoms, as it sounds from your words that you may have Parkinsons disease http://www.parkinsons.org.uk/Templates/Internal.asp?NodeID=91826 , but it seams like your doctor would have identified it.

betsybailey
05-29-2005, 11:16 AM
Yes it sounds like sle there are cases of it affecting the brain in the same manner as MS. I have it....WebMD really helped me learn about it. The cellcept causes nasty side effects. It's chemo...are you on oral or IV...Go back to the doc and say it's not working for you and you would also like something to counter the energy drain. I would be interested to hear more about your case. Let me know. I do know that lupus is not the end of the world just the start of a different road. It will get easier to deal with if you inform yourself and your doctor about your symtoms and when you feel a flare coming on. You'll learn to know with time.


Betsy

mitwit
05-29-2005, 02:03 PM
Hey, thanks for the replies. I sure WISH :!: my rheumy would do something to counter the fatigue.

Betsy B, you cound like you have really had experience with your history of lupus. I was a complicated diagnosis , the neuro and rheumy and GP all said, and I was treated for MS for a year with daily injections, and then they decided it wasn't MS, ( my brain lesions were small and not changing as with MS), and then I started getting tested more thoroughly for diferential diseases, and now the SLE diagnosis. I have met the criteria many times over, it seems. Malar rash, blood work positive here and there, nerve pain, facial numbness ( Sjogren's), nerve burnings, rib pain, wrist pain, knee pain,aching, dizzy on, and on....

This flare ( a month now) has been the worst ever. Fatigue and weakness are just persisting. I think he put me on Cellcept so quickly due to the CNS involvement, as well as digestive, and cardio/ pulmonary symptoms. I had had IV steroids in the past for the MS, and my symptoms worsened. Too intense, and I had rebound flare. Since then I have had IVIG, and they helped, but only for a very short time, and I flared even with those for a short while. I take Neurontin and some baclofen, and now the Cellcept.

Every thing seems to make me flare. I am hoping for a spell of relief and energy!!!!!!!!! :D I also am trying to learn how to live and manage this stuff. I am 49 years old, and have had this for years, but not as bad as now.