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Old 11-23-2003, 10:25 PM   #1
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Talking Hi, it's been a while since I've been here

I have posted here many times and somehow lost all my favorites when my computer crashed several times ago... yes, it has crashed 4 times.

Glad I caught up with you all and willing to share and help if I can.

I have had dx'd lupus for about 15-20 years. Main problems are all Central nervous system. Just acquired Lupus induced Transverse myelitis, before that, GBS and lots of PN.

Definitely had and still having a rough time and hope I get some answers or rather ideas to get me by.

My best, Kathryn
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Last edited by moderator2; 12-23-2003 at 06:33 AM. Reason: Do not use smilies/images from other websites. Please use only Healthboards smilies. Thank you.

 
Old 11-24-2003, 01:37 PM   #2
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Re: Hi, it's been a while since I've been here

Hi Kathryn!

Nice to have you back with us Wow, you have sure had Lupus for awhile- I am sure that your experience with it has helped so many people. I was just diagnosed in August of this year, but I have had Lupus since 1992. I have had quite a journey, but I am glad that I can help others! I try and use the knowledge that i have acquired to help other people out there searching for a diagnosis. There are so many!!

You said that you have had lots of CNS complications with your Lupus. Have you been tested for Antiphospholipid Syndrome (Hughes Syndrome)? It is a condition that can go with Lupus that makes the blood sticky. Some symptoms are migraine, history of stroke/TIA (mini stroke), DVT or leg clot, miscarraige etc. I have it, and I tell you that once my blood was thinned out I am a new person! The blood tests are the anticardiolipin and the Lupus anticoagulant. It's worth getting tested for, many doctors do the test but when its positive they dont do anything about it! Anyway- welcome back to our "hovel"!! Take care,

~Angelic

 
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Old 11-24-2003, 02:14 PM   #3
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Re: Hi, it's been a while since I've been here

Hi There Angelic,

Thank you for your nice welcome. I'm sorry it took so long to find out about your Lupus. It is so frustrating to go through so much and not get the dx. Personally I was happy to get treated... and even though Lupus was only suspected... I tried to come to grips with that. I can think of other things that could be worse. The journey can sure leave a trail a mile wide.

Yes I have had the test and I do have the "Sticky Blood". I'm not wanting to take the Coumadin.. at least I hope I won't have to.. so far I'm taking the Enteric coated aspirin. Working with my Rheumy and PCP, oh and my Neuro... they all seem to come together with what is best for me and it has been pretty good/decent so far. Not that Lupus has been behaving itself... I've had Lupus induced.. Guillain Barre Syndrome, Transverse Myelitis... and terrible PN. Taking my neurontin and other meds has helped. I'm hoping nothing that serious happens to me again. It's scared me so much that I pray all the time that I am always doing the right thing.

Keep a smile...

With hugs, Star

ps, what am I doing wrong with my Signature? It seems every site I go to has different rules and usage... darn.
__________________
Shoot for the Moon
and if you miss
you will still land
among the STARS!!!

Last edited by Kathryn; 11-24-2003 at 02:15 PM.

 
Old 11-24-2003, 03:37 PM   #4
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Re: Hi, it's been a while since I've been here

Hi Star (what a great name that is!),

It sounds like you have had quite a time with your APS! I am so glad that I decided to take the warfarin- I was on the enteric asprin and found that it wasn't eliminating my symptoms. With the coumadin, I have clarity and clear thinking. My headaches are a thing of the past and the tingling on one side of my body has improved a bit. It took my eyesight going bad (double and blurred) before I really understood what APS can do to a person. We are unsure if my eyesight will return, but I pray that it does soon.

I don't want to push you or anything but I have to tell you that having the "security" of the Coumadin is amazing. I no longer fear what could happen next! You don't even realize how cloudy your brain is, until the cloud is lifted. It has given me my life back so to speak. The Lupus is still reaking havoc, but that will soon be better. I pray lots too.. the Lord led me to England to see Dr. Graham Hughes in London (I am from Canada). He is the Rheumatologist that found APS in patients with Lupus in the 1980's. He is a truly brilliant man, and APS was named after him as Hughes Syndrome. I have learned so very much as a Christian that's for sure! It sounds like you have had your fair share to deal with too! I am on Neurontin as well, I take it 3 times a day for my neuro deficits. It seems to help a bit thats for sure. You take care and talk to you soon.

~Angelic

P.S. I have no idea about the signature thing- you are so right when you said that every site is different! This site recently had an overhaul! You could private message one of the moderators I guess and ask! At the bottom of the screen, there is a quick reply button.. you can type in what you want to say there and then hit the post button. That way you don't have to hit "Reply" and then your original post isn't quoted if you dont like that. Talk to you soon!!

 
Old 11-24-2003, 04:30 PM   #5
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Re: Hi, it's been a while since I've been here

Thanks Angelic,

I'll check out the Coumadin a bit... than the next time I talk to my Rheumy, I'll know what I'm talking about as well.

Thanks also for the info on my signature. I'll check it out.'

oh, and Star is for my email name [removed] I don't always post my name because it's another trail I hate to leave.
__________________
Shoot for the Moon
and if you miss
you will still land
among the STARS!!!

Last edited by moderator2; 12-23-2003 at 06:36 AM. Reason: Do not post contact information. These boards are for anonymous use only. Please carefully read and follow the board posting guidelines. Thank you.

 
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