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Sandoo
06-19-2006, 02:19 PM
Hello group! I am brand new to this site. I have had the following maladies and wonder if it would be worth my exploring whether I should consult a physician further about the possibility of Lupus:

Thrombocytopenia (diagnosed and treated during the last year, but not severe - just living with low counts - this is what got me to thinking about possibility of Lupus, although my hematologist doesn't think so based on blood work)
Melasma on my face (pigment patches that I am constantly fighting that get darker in the sun - I am not on birth control, nor am I pregnant, and I am quite fair-skinned)
Pleurisy (?) - not sure if this is what it is, but in the morning I have pain when taking a deep breath right after I wake up, but it's not a sharp pain, more dull pain in the lungs, and sometimes I cannot expand my lungs fully
Hemifacial Spasm (cranial neuropathy) - this was fixed with surgery in 1999 - not sure if it may be related to a systemic problem such as lupus
Night sweats - but not severe, just annoying - I wake up hot and sweaty, but not drenched
Some wierd joint problems every now and then, but nothing I can't just ignore or take Advil to relieve.

I am "only" 37, so I feel a little young to be having these little problems. All in all, my symptoms are bearable, so not sure how it would benefit me to explore further. If it is Lupus, and my symptoms are not interfering with my life, does it matter if I know or not? Will it get worse if not treated? Would treatment slow the progression?

Interested in all your thoughts - THANKS!!
:D
Stacy

pinkjmf
06-19-2006, 02:36 PM
I have not had a flare up since 2004 and about 1 and a half weeks ago I went with some friends to and outdoor event and spent the day in the sun.I totally forgot about flare-ups in the sun.My mind was on having fun.About 4 hours out in the sun wiped me out.I started hurting and aching all over.I have been in pain every since.I'm 36 years old and know that you don't think like this could happen to you at the time but let me tell you when your flaring you'll sure will remember that the next time.I told my husband that I'm never doing that again.I don't want to scare you just warn you about it,I wish someone would have told me.

biancavizz
06-20-2006, 10:36 AM
Hey I'm 18 and found out 2 years ago. The sun is major crazy for Lupus patients, well me, i know that for sure! I cannot go in the sun at all barely because i literally get sick from it. I pass out and everything. If you're just wondering whether or not you have lupus you should consult your doctor and ask them to run some tests, although the medical tests are not always accurate. It is best to go when you are in a flare up. If you do not know what a flare up is yet, you'll know when you're in pain and really tired, and your joints hurt. The face thing- you may have Discoid, like SEAL he had that. (my mom loves him) lol.. but yea, consult your doctor is the best bet.. some doctors (like my own) do not have a broad knowledge about Lupus and may send you to a Rhuematologist which is your best bet to find out what's really going on. Good luck with everything and don't forget, I may be young, but my body thinks I'm old. So take what I say to heart - I know what you're going through - Bianca -

ihate2shave
06-20-2006, 06:45 PM
Hi, of course you know no one here could say yes you may have it or not likely... but the things you describe would prompt me to go to a rheumatologist for some testing. (That is the specialty that diagnoses and treats lupus.) The key is to go to a GOOD rheum, and they're not all created equal. If you're in a larger city it's easier to figure out who's good. My suggestion is to pop into a lupus support group, share your problems and ask several people what rheum(s) in your area are supposed to be great. You may find out you don't have it, but hey it's good to know the truth.

stjames13
06-23-2006, 05:45 AM
8)
Just to let ya'll know that ther are several companies that sell UV resistant clothing.....like long sleeve shits, but they are NOT hot to wear very thing and comfy and not any different looking than any other shirt, pant etc.

Do a search on Google and you'll find these companies and then the ony thing we must be carefull of is our faces.

I have found these clothes to be very helpfull and I LOVE theoudoors and my garden and there is no way I will give up al my outdoor activities for this dieasse....it has taken enough from me and I am sure the rest of US !!

They are a bit pricey though....but CAN be written off on you taxes !!!!!

St James 8)

TracyDawn
06-23-2006, 10:06 AM
Can they really be written of on your taxes James? Seriously? How does that work? I get a catalog I ordered from Coolibar which makes sun protective clothing but haven't ordered from them yet.

stjames13
06-24-2006, 07:46 AM
8)
ON you TAX FORM where you deduct medical expenses EVERYTHING INCLUDING the MILEAGE WE DRIVE BACK AND FORTH TO THE DOCTORS IS ALL TAX EXEMPT !!!!

That mean any medecine you pay for even if it;s just a 10 or 20 dollar co-pay to time loss at awork that YOU DID NOT GET RE-IMBURSED FOR !!!

If you pay for your health insurance that too is deductible. Or if you just have a 200.00 deductible.

ANYTHING that is medical related is TAX DEDUCIBLE !!!!!!!

St James 8)

ihate2shave
06-26-2006, 08:09 AM
Re sun-protective clothing -- doesn't a regular cotton long-sleeve shirt block the sun? I don't understand why any other would block more... What is the fabric used? I can't wear synthetics, I get way too hot so generally wear cotton.

ButterflyRN
06-26-2006, 09:33 AM
Cotton only has I think an spf of 5 in it. I'm not sure what is in the other fabrics but I do know the tighter the weeve the better. Maybe someone else can better answer your question...

debann
06-26-2006, 09:38 AM
You can ask your regular doctor to do a blood test called the rhuematology panal. If any thing shows up they will do further tests. It's a general test, it doesn't prove lupus or any disease. If you have a positive ANA, even if it's low titer ask if they will do an antibody test, I think called an ENA. I have a low titer ANA 1:80 I think but antibody tests were high for one that indicates lupus and even though I had many criteria for years that is when they finally dx me. On the sun subject...I first showed signs of a rash from the sun 20 yrs ago and was told I had a sun allergy. Over the yrs I noticed I felt terrible after even a small amount of time in the sun. I now avoid it and the heat at all costs. I wear the expensive coolibar clothing and I love it. I even swam in the gulf of Mexico in the hoodie shirt! THey dry super fast too. Thanks for the tip on the tax deductible!!! I'll do that for sure. Good luck debann

ihate2shave
06-26-2006, 12:32 PM
Check out this link on Rit Sun Guard laundry treatment - it puts sun protection into your clothing... much cheaper than buying things from the manufacturers.

http://www.amazon.com/gp/product/B0000Y3F6W/103-3989024-6020621?v=glance&n=3760901