Sjogren's?

[CleverName1219]

Well, my grandmother was always feeling bad. My family called her a hypochondriac and said she had anxiety. They say the same thing about me. She had started complaining about numbness in her toes (but I think she meant pins and needles) and itching in her shins. She was convinced she had fibromylaigia, but her doctor diagnosed her with peripheral neuropathy. She was prescribed Neurontin, which didn't help. She loved to dance. A doctor performed some kind of surgery on her legs, which left her in terrible pain and she couldn't dance anymore. We know she was misdiagnosed because the doctor responded to her pain with, "Well, i did surgery on you under the pretense that you had no feeling in your feet."
Then, she started sayiing her eyes always hurt. The doctor said she had cataracts, so she had cataract surgery, which again left her in terrible pain. A trip to another doctor confirmed that she did not have cataracts, she in fact had dry eyes...I felt so bad for her...cataract surgery on dry eyes...that had to be excruciating.
I know she had been diagnosed with rheumatoid arthritis some years earlier. She passed away in 2005. We were really close and I miss her terribly. I named my daughter, Mae Cherie, after her. She's two and a half.
I always thought my grandmother might have lupus, but the diagnosis was never made. I know my great grandmother was also diagnosed with arthritis and peripheral neuropathy.
Due to the "sickly" nature of my great grandmother and grandmother, the rest of my family tends to avoid doctors. I seem to be in the hospaital all the time. I do, however, know that both my mother, my uncle and myself all get a rash. The rashes are different in all of us, but tend to flare up around the same time. My mother also complains of allergies which (unlike the typical "juicy" nature of most allergies) she says leaves her nose and eyes stingy ( same problem I am having.) Thinking about it now, my uncle is always complaining about dry throat and mouth, but seems to think it's from drinking our horrible tap water, which I never do.

I am due in early July and have decided to named the baby Cadence Sohall (pronounced 'Saul', it was my grandpaw's first name.)

[Prairie Gal]

Melody, that's an interesting family history.  However, many people develop osteoarthritis as they get older; this is just wear and tear through the years.  The kind that really attacks the joints is rheumatoid arthritis (RA) and a history of RA would be one you should mention at your appt.  Do you know if it was RA she had?

Dry mouth and throat can be caused by all kinds of things, so your uncle may have that problem from something totally different.  Diabetics often suffer from 'pins and needles' (peripheral neuropathy), but it sounds like your family members have been misdiagnosed more than once.  So I'm not sure these details will clue your rheumy in.  Plus, most appts. these days are limited to about 15 minutes so you want to maximize your time with the dr.  That's one reason I take the index card with me with my most important questions.

I encourage you to go to the Sjogren's foundation web site (http://www.sjogrens.org) because you'll find all kinds of information about symptoms, diagnosis, treatment and survival tips.  You may not have SjS at all, but this can help you understand what the dr. looks for to make a Dx.

Hey, my birthday is in mid-July - how about that!

Take care,
Prairie gal

[Prairie Gal]

Melody, just re-read your last post and see that your gram did have RA, so that's a good piece of information to give your rheumy.  The rashes may mean you are sensitive to the sun; have you noticed that's when you get a rash?  That can be a symptom of an AI problem. 

Prairie gal

[CleverName1219]

The versicolor rash has always gotten worse in sunlight. The itchy rash on my leg seems to behave on its own accord.

My rheumy appointment was yesterday. But a receptionist called and cancelled the appointment right as I was walking out the door. Apparently the doctor wasn't in and won't be in until Monday. When I called back to question the principles behind the cancellation, i was very upset and crying. I told the woman I was very scared and worried because I'm pregnant. I also mentioned that they had been putting me off since September and I finally got the appointment and they cancelled it on me ON THE DAY OF IT. The receptionst told me i was being rude and threatened to hang up on me...I was just crying. I wasn't yelling or cursing. I don't think this woman has kids or knows what it's like to worry about yourself on someone who is dependent on you's behalf...

I'm feeling really discouraged.

[CleverName1219]

Went to the rheumatlogist yesterday. Apparently I have a discoid rash on my face. I didn't think anything of that. My face has been slightly red across my nose for as long as i can remember. They drew alot of blood. He told me he suspects Systemic Lupus Erythmetosus (i probably spelled that wrong). I don't really know what comes next.

[Prairie Gal]

Melody, if the Dx of Lupus is confirmed, that would explain why your rash gets worse in the sunlight.  Lupus patients need to stay out of the sun.   I learned this from a friend who had Lupus, so he always wore long-sleeved shirts, etc.  There is treatment for Lupus, so if you get the Dx of Lupus confirmed, your rheumy will  know what meds, etc. to prescribe.  Since everybody reacts differently to drugs, it may be trial and error for a while, of course.

Prairie gal

[Scottietottie]

Hi

A lot of SjS people get sun sensitive too and Plaquenil can also cause photosensitivity. I can get 'burnt' throough a car windscreen these days and I used to be able to take the sun for hours. Now I have to lather the sunscreen on and cover up. I prefer night time!!

Take care - Scottie 

[Rostradamus]

Sugestions, ask your doctor if you can have the blood tests done when your symptoms are bad or "flared"Try to notice if expodure to UV light; outside even on a cloudy day or flourecent lights in stores make your rash, eyes or mouth sores worse. Your opthalmologist can use two different stains thet will show auto-immune attack and damage. I have both my lower eye ducts pluged off, and next visit will finally have the top ones done permanently.   Go to  www.MayoClinic.com  or www.WrongDiagnosis.com for more diagnostic test lists and symptoms.  Also www.LabTestsonline.com   Some very useful starters.    Rostradamus