mumeva
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| Rank | Group Leader |
| Online Status | OFFLINE |
| Member Since | 12/09/2007 12:24 PM |
| Last Online | 05/18/2013 09:55 AM |
| Gender: | Female |
| Birthdate: | 06/15/1958 |
| City: | Ukiah |
| State: | California |
| A little about me: | I was diagnosed with Systemic Lupus in 1996. At that time it was just the skin now it has evolved into Central and Pheripheral Nervous System Lupus. I had a brain hemorrhage in August of 2007 and another one in January of 2008. I was sent to a neurosurgeon who told me that I needed to have an MRI every six months to keep an eye on the area of the hemorrhage that it could possibly change. I started having seizures and now seeing a neurologist who put me on an anti-seizure medication. With all of this I still take care of my home including my husband-son and two cats. I also do the bookwork for our family business. I filed for diability in 2006 and was finally awarded disability benefits in June of 2009. I am going to a new Neurologist who is fantastic and comfirmed that I do have Central Nervous System Vasculitis Lupus. I do have partial complex seizures but am taking two great anit-seizure medications and on occassion I still have seizures. Recently I have been having some hallucinations...seeing things that aren't their and hearing music that isn't their....so now my Rheumy believes that the Lupus is going into Lupus Cerebritis....inflammation of the brain....and I was also diagnosed with a rare disease called "Mesenteric Panniculitis"....it is the inflammation of the adipose tissue (fat tissue) surrounding the small bowel...so my Rheumy put me on CellCept to help with this and in hopes I can get off Prednisone....so all in all I still have my bad days and good days. Update on my daughter.....she was diagnosed with Antiphospholipid Syndrome along with Lupus....she was put on Plaquenil for 4 months....the problem is we were supposed to see our Rheumy in January but on December 29th she passed away in her sleep....so now we are waiting to see if someone from UCSF will take over her practice, in the meantime I am being taken care of by my Oncologist to watch over my Rituxan infusions and my general doctor for my other medications....Melissa (my daughter) is moving to Orlando, Florida in March so she will find a specialist their. We are in great hands as we have Trust and Faith in God...after all he is the great HEALER!! |
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My Recent Posts
| Quite a Day at the Rheumy's | 05/17/2013 | ||
| Quite a Day at the Rheumy's | 05/17/2013 | ||
| Bad case of brain fog | 05/16/2013 | ||
| Need help with the heat and Su... | 05/16/2013 | ||
| Let's try this again | 05/15/2013 | ||
| Need help with the heat and Su... | 05/15/2013 | ||
| explanation | 05/14/2013 | ||
| Emotional Wreck | 05/14/2013 | ||
| I would like some help please | 05/14/2013 | ||
| 25 year old Male - 2 seizures ... | 05/14/2013 | ||
| blabbing about nothing | 05/13/2013 | ||
| Help and advice needed | 05/12/2013 | ||
| Happy Mothers Day | 05/12/2013 | ||
| Help and advice needed | 05/11/2013 | ||
| Happy Mothers Day | 05/11/2013 | ||
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