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Lupus help

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Old 07-05-2003, 10:09 AM   #1
Join Date: Jul 2003
Location: pembroke nh USA
Posts: 5
jkg75 HB User
Question Lupus help

I need some good advice from all of you brave souls out there suffering from an autoimmune disease! Here is my story and I will try to keep it as brief as possible...

My name is Jackie and live in the beautiful state of NH. I am 28 with two children, 8 and 3. Right after my oldest was born my body started doing some off the wall things, ie, I broke out with shingles many times, I go out into the sun and I am COVERED in hives that last about 2 weeks only on the sun exposed areas of my body. Last Sept. I was hospitalized for fever, fatigue and incredible body pain. They took blood and found that my white blood cell count had sky rocketed. They never found out what happened. They did a spinal and found no infection. Two days later I went back because I thought my head was going to blow and had to have a blood patch to create a clot where my body hadnt from the spinal. About a month ago I broke out with a red discoloration across my nose and cheeks. I went into the doctors and she did some sort of blood work for Lupus and it came back neg. so now she is blowing me off. I have had a slightly pos. ANA(?) I have a painful rash on my hands and soles of feet that comes and goes, I cant sleep enough, hairy tongue, joint pain, raynauds and I had Pneumonia 3 weeks ago and I think it is coming back. I have these strange raised patches that are not hives (they dont come and go, they stay)and dont itch, they look scaly. I also have a strange burning sensation around my mouth which is a new one to me. Canker sores in my mouth, excessive hair loss. By the way, my mother and grandmother has SLE and most of the same symptoms but the doc is telling me its not hereditary. I dont know what to do. I feel like I am going crazy and thats what my doctor thinks so she has put me on anti depressants. Can someone help me? Any advice would be greatly appreciated because I have nobody to talk to. My mom is so sick that she is barely coherent and cannot offer any advice or info.

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Old 07-05-2003, 12:03 PM   #2
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Join Date: May 2003
Location: Virginia, USA
Posts: 2,347
BarbaraH HB UserBarbaraH HB UserBarbaraH HB UserBarbaraH HB User


I can identify with many of your symptoms (no shingles or pneumonia) and I was diagnosed with lupus 4 years ago. My initial ANA was 1:40 (normal is 1:39 or less)and it was drawn while I was having the 1st episode of red, non-itchy, scaly rash on my forearms and hands,extreme fatigue, swollen ankles and knees and hip pain. I also had a doctor with the empathy and manner of a rock - I left that doctor and went to a rheumatologist who repeated my ANA 6 weeks later and it was 1:600. He said he thought I had lupus, but time would tell as I had more symptoms and what they were.

I'd recommend a repeat of your lab work in a few weeks - and maybe find a rheumatologist since the main lupus symptom is arthritis. By the way, I'd been put on Celebrex by the 1st doctor and the rheumy had the insight to realize all my symptoms had worsened after I started taking it. He told me folks with autoimmune diseases could suddenly become allergic to anything. He stopped the Celebrex and started me on Naprosyn. The rash went away and has not returned and I consider myself allergic to Celebrex (and therefore, to Sulfa, since Celebrex has a sulfonimide in it's chemical make-up).

Lupus has 11 main symptoms (do an on-line search with your topis "lupus symptoms") and you probably have lupus is you have 4 or more of the 11. Since your mom and grandmother have lupus, you probably already have a good idea that your doctor is wrong.

Hope this is helpful. I wish you well! Barbara

Old 07-05-2003, 12:50 PM   #3
Join Date: Jul 2003
Location: pembroke nh USA
Posts: 5
jkg75 HB User

Thanks so much for your insight as any is appreciated. My doctor is not interested in doing anymore lab work because the test was negative even though I had no flare up at the time. I am in the process of going to another doctor at this time. My doctor right now is telling me that it isnt uncommon for people to break out in hives after sun exposure (I dont know of anyone else besides my mom)or to get shingles. Her (my doctor) logic is that I might have an allergy to wheat!?! I am going to take some high quality photos tonight since I am COVERED in hives from going to the beach with my kids and of my mouth. I am just so frustrated with the very visual migraines, pains in my fingers, elbows, wrists and ankles, hives, etc. Can someone else tell me if they know of any other autoimmune illness's that have similiar symptoms besides fibromyalgia. I have no pain when someone touch's me.

Old 07-06-2003, 08:18 PM   #4
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Join Date: Jun 2003
Location: Oh
Posts: 26
marionf HB User

Yes, it sure sounds like Lupus to Me. Your Dr. is wrong autoimmune diseases do tend to run in families. Glad you are going to go to another Dr. that one sounds like a real loser. ANA
results change all the time some times neg and other times positive. It is not the sole indicator of Lupus. An allergy to wheat
I believe is called celiac's disease which is guess what--
autoimmune! NOTE to Barbara H: I read somewhere that people with Lupus are often allergic to sulfa drugs.


Old 07-07-2003, 11:36 AM   #5
Join Date: Jul 2003
Location: pembroke nh USA
Posts: 5
jkg75 HB User

Funny that you say that about celiac's disease. My mother also suffers from that. Today I awoke with a new one to me.... a swollen and painful gland in my right groin area.. can anyone relate to this?


Old 07-18-2003, 07:25 PM   #6
Join Date: Jul 2003
Location: metropolis, ILLINOIS USA
Posts: 2
faulkner99 HB User

hello everything you are saying points in the direction of lupus. don't give up find a Dr. who know Lupus and that will help you. I went to a couple of
Dr's that blew me off and said I had minor problems. Then one day at work I got Dizzy and my friend convinced me to go to a Dr. tha she knew. come to find out I had a stroke and he said that it was due to the fact that I have lupus and now I am getting help. The right Dr. makes all the difference. DON"T GIVE UP !!!!!!
god bless

With God all things are possible
With God all things are possible

Old 08-10-2003, 03:42 PM   #7
Join Date: Aug 2003
Location: CA, USA
Posts: 4
endosister HB User

I have had the swollen and painful gland in my groin area, the doctor told me that was just a skin condition from shaving too much, but it seems to come and go with other symptoms (flare-ups) too much for me to really believe that.

I haven't been diagnosed with lupus but have many symptoms, and my sister (who has almost identical symptoms to me) just tested very positive on the ANA test so they're doing further tests and sending her to a rheumatologist. I am trying to find a decent HMO primary doc so that I can get referrals and tests done as well. I have endometriosis and I was attributing everything to that, even though I have symptoms like Raynaud's, arthralgia/myalgia, rashes that come and go with sun exposure, bleeding gums, overwhelming fatigue that hits in waves... etc. I have been doing pretty well for a while, but the whole thing scares me now, both for my sister who is really sick at the moment, and for myself.

I don't know quite what to do.

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