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.
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.
Peace and Blessings
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.
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
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.
:) 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
I have e mailed you the new addy
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.
I have added you to my msn and yahoo messengers--buzz me anytime
I have updated my forum board link in www
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!