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11/06/2008 12:55
James07
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Hello,

Nice to meet you all.

I just found this wonderful site while researching medical info.

I am just recovering from a 3 mo. flare.

The original DX was MS..but was ruled out per blood tests.

Now I am in shock.

I have been DX with.. Multi Connective Tissue Disease & all the stuffies that go with it.

I have started meds I had never even heard of.

At the optho's appt. yesterday, he placed plugs in my tear ducts!

I have raged, cried been numb..and prayed.

I am now prepared to face this thing down.

One wise Doc told me to "live, laugh, & Love each & every day...like it was my last day!"

Great advice for anyone..yes?

That said, I can use the company of folks that can understand. It is kind of overwhelming.

Take SPECIAL care,

Remember,

"And this too shall pass"

Kathy-<><

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11/06/2008 18:24
redhairali
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Hi Kathy. Welcome to the board. This is a great place to ask questions, or just vent. It seems like all of the autoimmune diseases seem to overlap to some degree. I have been dealing with SLE for 30 years and APS for 18. Just a world of fun. Once again, welcome.

Ali

Post edited by: redhairali, at: 11/06/2008 21:38

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11/06/2008 19:43
James07
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redhairali,

Thanks for the warm welcome, you are too kind.

I do have major organ development..particularly kidney disease..cystic kidneys..lupus nephritis.

I have white matter disease (brain) that affects my balance.

Fibro/EM..systemic peripheral neuropathy, again major organ development.

Was told I should have been treated years ago (started in my 20's)

Is now a salvage job. just trying to save what is left.

Been treated for IBS for 35 years.No one ever figured out it was all autoimmune stuff.

So, that said I am still me..not the disease!

I am a fighter, and a survivor..that makes me stronger than alot of folks I know!

Gentle hugs,

to a fellow soldier!

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11/06/2008 21:26
Faith19
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hi..im am just curious,,have you ever done hip replacement? Thanks a lot and more power to you

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    Alone and isolated
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11/06/2008 21:35
redhairali
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I have not had a hip replacement. I have SLE, lupus nephritis, heart involvement and with the APS 3 strokes. My memory is real hit or miss but, all and all feel pretty good. I know it could be much worse.

Ali

Post edited by: redhairali, at: 11/06/2008 21:37

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11/07/2008 08:09
Faith19
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nice to hear from you taht you're doing pretty good.keep it up. CHeers!

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    Alone and isolated
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11/07/2008 14:07
mumeva
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Kathy - I have a question for you. What is white matter disease? I was curious because I have been diagnosed with central nervous system lupus vasculits and have had two brain hemorrhages and now I believe I am having another leak in my brain. I am going to have another MRI and MRA next week to see if there is indeed another leak. I have been to a neurosurgeon who said that area of the brain is dead and I'm not getting signal from that area and that every six months I should have the MRA & MRI done and that will be in June but I believe that I'm having leaking in maybe another vessel in that area because it happens on the right side of my head by the earhorn and I get severe vertigo and my ear hurts quite abit and sometimes I can't hear and have had seizures. So I was just curious about the white matter disease. Thanks.
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11/07/2008 22:25
James07
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This is a long read, but has tons of info!

Hope this helps,

Gentle hugs,

Kathy

http://spinwarp.ucsd.edu/neuroweb/Text/br-840.htm

http://chorus.rad.mcw.edu/doc/00113.html

Post edited by: James07, at: 11/07/2008 22:28

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11/14/2008 11:31
mumeva
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Thank you for the information. I did read it and it was helpful.
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