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val
12-07-2004, 08:33 PM
Hi I'm Val, a retired Nurse from Uk. I was surfing for info on sero negative lupus and came upon you. I run my own message board but always looking for new ones.I was diagnosed last year by Dr Graham Hughes--Uk's best, he recognises sero negative lupus, but local rheumies don't they tell me i have Fibromyalgia even though I have Nephritis, Thrombocytopenia, sticky blood, circulatory changes to brain, hypothyroidism, high blood pressure and high cholesteroland Sjogrens. I have done lots of research and know Fibromyalgia is non systemic and its obvious mine is so i just keep looking for more info.
Look forward to getting to know you all better. I assume most of you are from USA--do you mind a Brit dropping in.
Val

Saysusie
12-21-2004, 02:42 PM
Hi Val and welcome to our site :lol:

Seronegative systemic lupus erythematosus is defined as a SLE devoided of antinuclear factors as well as of LE cells when at least 4 out of the 14 ARA criteria are present. This kind of SLE is characterized by a high incidence of Raynaud's disease, photosensitivity, oral ulcerations, alopecia and perhaps less frequent kidney and central nervous system involvement.
It is quited possible to be seronegative and also have Fibromyalgia. You are doing the right thing by researching your disease and educating yourself as much as possible.
I give an explanation of seronegative lupus in the
Newly Diagnosed" forum on this site. Perhaps it will help you a bit more!
We are here to help you in any way that we can and to offer you support.
Thank You For Supporting Our Site.
:D
Peace and Blessings
Saysusie

val
12-21-2004, 06:19 PM
Hi and thanks--I am a retired nurse of 33 years used to research. I am very different--lol i don't have Raynauds but I do have some kidney involvement, Thrombocytopaenia, High blood pressure, high cholesterol. I have aps and have circulatory changes in brain i also have sjogrens, just the bloods thats a problem.I have nasal sores more than mouth ones but get oral thrush too.I also have a lot of neuropathy. Its a strange illness, i am struggling with bronchitis at present--on top of asthma not much fun--oh well such is like.
Will pop by again,
Thanks for an informative site.
Val

Saysusie
12-23-2004, 01:20 PM
Hi Val;
Oh, you are soooooo right about this being a "STRANGE" illness. It never affects any two persons the same and no one has identical symptoms..we all suffer from so many different symptoms due to this disease. That is what makes it so henious, so difficult to treat and almost virtually impossible to cure!!
But, we keep ourselves informed, we support one another and we share our experiences. We are our own strength!!!

Thank You So Much
for the support you have offered on this site!!

Peace and Blessings
Saysusie

val
12-23-2004, 01:26 PM
It's my pleasure. i like this site. I like fun sites too but its good to have somewhere where we can share views. I have my own less formal message board which i have linked with yours. Its good to get a balanced mix. I would never want to get obsessed with lupus but sometimes symptoms are worrying--thats the time to share views.

Merry Christmas to you and Feel free to come take a look at my site, Link at bottom of my post.

Val

redmel
03-14-2005, 08:27 AM
:) Hello Val are you ok I cannot find you anywhere I hope you get this.
I want to know if you have set up a new site as I miss Valwoody.
Take care love from Melody xx

val
03-14-2005, 09:36 AM
I have e mailed you the new addy

Love Val

dresbaby
03-17-2005, 06:48 AM
Hi Val! I'm new to this site, too.

I'm interested in your post about your "sticky blood". Since you are a nurse, could you tell me more about it. I have it, too, but of course, they gave it some big long name I can't remember, but my regular MD said just call it 'Sticky blood".

Anything you can tell me about it would be greatly appreciated.

val
03-17-2005, 01:13 PM
Hi Rhonda,
I have added you to my msn and yahoo messengers--buzz me anytime

I have updated my forum board link in www
Val

Evenstar
03-18-2005, 05:59 AM
Hi Val,

Just wanted to say hello to you, I am new here. I noticed from your posts that you have a website and I have registered today, if thats ok? I will look forward to posting an introduction message, once I am validated!

Carly

val
03-18-2005, 06:31 AM
Thanks Carly
Just got back home I will sort it now
Val

dresbaby
03-18-2005, 07:06 AM
Yeah, Val, my fingers are hurting today so I can't do much typing, but I did take a look at your site and would like to join.

Take care,
Rhonda

BetsyBuddha
03-18-2005, 05:20 PM
Hello,
I have both Fibromyalgia and SLE. I am very scared about this sticky blood is this related to the CNS vasculitis? And what exactly is sero negative lupus? My ANA test was 1:640 and my DNA was > 200. ANd I don't want to go to the edge of death again. Brain anuersyms run in my family, in retrospect my grandmother who died at 42, who had 4 brain aneursyms, I believe she too had lupus but she died in the early 80's and was never diagnosed but my grandfather says she was a hypocondriac, of course .... even my rheumatogolist said you haven't showed any labs indicating lupus for as long as he has been my doctor, and then he says sorry, but we have serious issues now. I am sorry I ever doubted you. I was diagnosed at Princeton Medical Center by Dr. Tiku and then the UCONN Foundation, by Dr. Rothfield. These are foremost lupus doctors, I found myself thinking maybe the diagnosis was incorrect, and then St. Patrick's Day comes. I have lost 45 pounds since November and 2 inches from my height. The nurse said, "oh that's bizarre, you lost inches in your height." I was 5'7", now I am 5'5". I don't know because I am scared...

Lupus is like a terrorist, I never know when or where it's going to attack...
The threat level is sticky blood red.
Does anyone know anyone who has had this an survived... not lupus the CNS v and Brain Aneursyms? I need some reassurance that I can get back to remission.

Thanks,
Betsy

val
03-18-2005, 05:31 PM
Hi betsy
sero negative Lupus is lupus diagnosed without positive antibodies. 90% of lupus sufferers are sero positive==i am one of the other 10%.
I do have sticky blood but am treated with Plavix as I have had low platelets and tend to bleed.
Are you on warfarin,
If you ever want to chat my msn, and yahoo messenger links under my name. I am an ex nurse and a good listener. Please try not to be to afraid. I know that is easier said than done but don't let lupus totally dominate your life.
Take care and I look forward to chatting to you

Val

val
03-18-2005, 05:33 PM
Dear Rhonda
Please join my site when ever you want-anybody else welcome.Its fun as well as information and support. Links under my post

Val