Sjogrens Syndrome - Immune Disorders Message Board

FayeRay · 04-18-2004, 07:58 AM

Hi,
I have Sjogrens Syndrome and am relatively new to it. I have periferal neuropathy caused by it as well as all the other problems. I am getting ready to start an antibiotic protocol.

I have recently discovered some wonderful moisture goggles made for dry eye patients. They have allowed me to sleep without waking up with my eyeballs stuck to my eyelids.

Anyone else have this disease?
FayeRay

Suecat3 · 04-19-2004, 05:26 PM

I have Sjogren's too, but not the typical symptoms (dry eyes and mouth, etc.). My main symptoms are fatigue, night sweats, and swollen lymph nodes. I'm taking Plaquenil. I'd be interested in knowing how the antibiotic therapy works for you; I've read good things about it.

SandyGirl · 04-25-2004, 04:53 PM

Hello to both of you! I too was diagnosed with sjogrens, however I post on the Lupus board because I know there is a lot more to my auto immune problems than just sjogrens, but the blood work wont prove it (and with AI diseases it sometimes never shows!!)
When you say you get neuropathy, can you be more specific?? do you get pins & needles? burning sensations?? I as because I am new to this all over burning sensation, and I don't know what is causing it! My eyes are really bad in the morning too, they stick to my eyeballs

my mouth gets dry but it is not unbearable, it too is worse in the morning.
How were you diagnosed?
Did you ever get tested for any other AI diseases? (like ANA blood work?)
Can you please tell me all your symptoms other than the dry eyes... becuase I am in a "figure it out myself" stage. My hair is falling out by the handful, and my rheumy is telling me it "could" be the sjogrens.... I KNOW ITS NOT! I am a girl (29 years old) so it is definately not a natural hair loss!!! I am having a biopsy done on my scalp

Anyway, enough of my pains because I can go on & on & on & on... if you are interested you can look me up on the Lupus boards. For now I would be interested in hearing your sjogren stories, and the "neuropathy" symptoms.
Be Well!!!!!
~Sandy

FayeRay · 04-25-2004, 08:36 PM

Hi to both of you. Yes Sandy, the neuropathy is a burning, freezing, electric shock, pins & needles horrible pain. Mine is caused from a combination of Sjogrens and not absorbing B12 like I should. Are you taking B12? I take 5mg. of sublingual B12 every day. People with Sjogrens have a problem with something called intrinsic factor. A lack of it causes them to not process B12 from their food. Lack of B12 can cause neuropathy, loss of nails, loss of hair, depression, cognitive problems, etc.

Are you seeing an eye doctor? If you let your eyeballs stick to your eyes, you can cause permanent eye damage.
FayeRay

SandyGirl · 04-26-2004, 02:45 AM

hi fayeray,
no, i am not seeing an eye doctor, only a rhematologist who told me to use artificial tears. Maybe I should go to the eye docotor now that you mention it. I never heard of that B12 either, but I think my blood was checked for a B deficiency and it wasnt. Were you ever checked for other AI diseased?
Be Well