Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 I have been diagnosed with Lupus (SLE) since Aug. 1988 (yes that is TWO 8's). Now I'm 36 and I have A LOT of organ involvement. It's been working on my brain for the past 5 yrs. and it's getting worse. I have an " episode " about 2 times a week now. I usually go to the hospital about once a year, via ambulance...my last time was a few weeks ago. They, the doctors, don't know what to do for me. Do you know of any meds that can stop Lupus from attacking the brain? Plus my liver panel is TOO HIGH too. But I'm still fighting even though some days I want to just go to sleep and receive my wings. I'm just now starting to come around after the departure of Rion. That's why I'm posting again. I still miss her. I'll look forward to your response. Love, In California > I'm sorry your tremors are so bad . I have a small problem with my head > and hands. It is mostly in my left thumb. Weird; I think it is benign > familial tremor. > > My mom had it. I get embarrassed when my hand shakes too or when I am > writing a check. Your problem is bad though and it is hard to imagine > someone being so cruel as to think you are strange when your illness is so > obvious. Sometimes people suck. > > _____ > > From: auroraskyward [mailto:AuroraSkyward@h...] > Sent: Friday, June 25, 2004 3:16 AM > To: LUPIES > Subject: Re: DOES ANY ONE HAVE SPASMS > > > > I know I have had the " shakes " for quite some time now. I feel like I > am having seizures. It seems to intensify when I use the muscles (like > using my hand to open a door, eating, or writing). I get REALLY > embarrassed...especially when we go out to eat and I start > shaking...my husband or my son, who is 16 too, has to feed me...I > shake so bad that all the food on my fork or spoon is gone before I > have enough time to get it to my mouth. I feel shaky too inside (that > one's a hard one to explain to doctors). They, some doctors, say it's > a result of Lupus attacking the brain...like Lupus seizures but they > cannot be detected through tests (like for epilepsy, narcolepsy, > etc.). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 I have been diagnosed with Lupus (SLE) since Aug. 1988 (yes that is TWO 8's). Now I'm 36 and I have A LOT of organ involvement. It's been working on my brain for the past 5 yrs. and it's getting worse. I have an " episode " about 2 times a week now. I usually go to the hospital about once a year, via ambulance...my last time was a few weeks ago. They, the doctors, don't know what to do for me. Do you know of any meds that can stop Lupus from attacking the brain? Plus my liver panel is TOO HIGH too. But I'm still fighting even though some days I want to just go to sleep and receive my wings. I'm just now starting to come around after the departure of Rion. That's why I'm posting again. I still miss her. I'll look forward to your response. Love, In California > I'm sorry your tremors are so bad . I have a small problem with my head > and hands. It is mostly in my left thumb. Weird; I think it is benign > familial tremor. > > My mom had it. I get embarrassed when my hand shakes too or when I am > writing a check. Your problem is bad though and it is hard to imagine > someone being so cruel as to think you are strange when your illness is so > obvious. Sometimes people suck. > > _____ > > From: auroraskyward [mailto:AuroraSkyward@h...] > Sent: Friday, June 25, 2004 3:16 AM > To: LUPIES > Subject: Re: DOES ANY ONE HAVE SPASMS > > > > I know I have had the " shakes " for quite some time now. I feel like I > am having seizures. It seems to intensify when I use the muscles (like > using my hand to open a door, eating, or writing). I get REALLY > embarrassed...especially when we go out to eat and I start > shaking...my husband or my son, who is 16 too, has to feed me...I > shake so bad that all the food on my fork or spoon is gone before I > have enough time to get it to my mouth. I feel shaky too inside (that > one's a hard one to explain to doctors). They, some doctors, say it's > a result of Lupus attacking the brain...like Lupus seizures but they > cannot be detected through tests (like for epilepsy, narcolepsy, > etc.). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2009 Report Share Posted May 28, 2009 I ALSO HAVE " TREMORS " NOW TOO, I AM TAKING HALOPERIDOL FOR THE NEW DISEASE, SHATTERED NERVES. WHAT NEXT. I WILL WRITE TOMMORROW. DID'NT HAVE YOUR ADRESSS JACK. LOVE MARY LOU AND EARL THE FLOWERS ARE BEAUTIFUL. THANK YOU ONCE AGAIN. RICMOND VA MARY LOU AND EARL IPF - 02 Quote Link to comment Share on other sites More sharing options...
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