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Date of last update: 8/21/2017.

Forum Name: Rheumatology Topics

Question: Sever Lupus SLE

 rshipley - Tue Mar 04, 2008 9:38 am

Hi thank you in advance for any help you can give.

I am a 43 white male I have had these problems sence 1995.

I was diagnosed with Atiphospho lipid antibody in 96 after I had several Heart attachs and strokes. I am on warfrin my INR has to be between 3. to 3.5.
In 97 I was bleeding out into the lungs and the cavity around the heart. I was placed on a breathing machine and put into a drug indoced coma. The doctors put an A line in my left arm and placed a cover over it and didnt pay attiention to it needless to say a clot formed and it was to late it destroyed the a large amount of nerves and i can barily use it.

I was diagnosed with lupus SLE in 2001 and have been taking tons of differant meds too much to list here. The Lupus has been out of control sence 2002 of and on. The Lupus is effecting my Lungs, Heart, brain and kidneys. I am on oxigen for the lungs are so bad. I have probles with memory, thinking strait and halucenations.

In 2005 I had a clot in my right kindey even though my INR was a 15. It was so hi because i was so sick, vomiting unable to eat and sever halucnations, and server jerks all over, i couldnt hold a cup because the jerks were so bad, my wife called 911 and they found a problem with the kidney and put a shunt in it. I also had a seisure while in the hospital and the nurses and doctors observed this. I saw a nerologist at the VA he said i had epolapcy, then another doctor at the VA said i didnt (the VA goes through doctors like i do with tissuse when i have a bad cold. in other words they cant find their behind with both hands) I am on sisure meds.

The jerking was diagnosed as myoclonic jerks in 2005. I am not sure if is that or not. I have these jerks when Im wide a wake, there are times that i cant hold a cup or fork my wife has to help me when i have these problem.

Ok to my question. Is these jerks related to the Lupus SLE?
My remitologist gives me a blank look when i ask this. (man i hate the VA), but i have no choice to go there. I have medicar but we all know how that works.

Sorry for the bad spelling and thank you
 Dr. A. Madia - Sat Apr 05, 2008 6:52 am

User avatar Hi rshipley,

I have gone through with your long winded question- and with some difficulty!!- and you have my deepest sympathy with you on having a complicated systemic disease like SLE with all its multisystem manifestations.

To answer your query, yes, SLE is a multi system disease, there are various types of antibodies circulating in an SLE patient and the manifestations vary according to the type of antibody.

The fact that you had Antiphospholipid positive goes strongly in favor of a CNS [Central Nervous System] involvement and this leads to siezures. Unless proved otherwise, siezures in SLE with antiphospholipids is always due to SLE itself.

Also, since you had strokes in the past. A stroke leaves a scar tissue in the brain. This scar tissue sometimes becomes a focus for seizure initiation.

I hope this is of help,


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