newly diagnosed

I've been a medical mystery until recently. Now I fear it's too late. I'm very ill, but finally diagnosed.

Since the age of 14 my T-cells have been running low. At that age I was first tested for HIV and Mono. I had never had intercourse or been out of the Country. Ever since then I had been getting very ill with no explanation's.

A couple month's ago I looked up Lupus symptoms and tests. I copied the test and sent them to the Dr. to run the test on me. Pos. test results. Then the test was run again to make sure and the results were pos. test results for Lupus. I'm the one who found the tests panel to run.

I told the Dr. I was in a Win and Lose situation all this time. She told me not to give up.

 

Sorry I did not explain myself correctly. I have had the panels done by the rhuematologist twice. I have the symptoms also.

I agree not having a diagnosis is difficult to say the least, it was actually my family dr of at that time 28 years that diagnosed me. He was actually the dr that was going to deliver me. long story. anyhow, I had been sick and progressively symptoms and such got worse, i served in the gulf war and had three kids right after Jan 1992, dec 1992 and then in june of 94, i seriously thought i was going insane. I thought i was a hypochondriac. i had suffered from migraines off and on since 15 years old, so any way my family doctor knew me from birth, new my personality and new something wasn't right. He said he suspected something and he wanted to try a medicine for a month, if i had some relief it would not verify but confirm his line of thinking and if not well i would get off the med and move on. Well it helped. I had a ton of symptoms but other than the medicine leading to you have some type of auto immune disease my best guess is lupus. but my lab work was inconclusive, my sed rate high by ana always looked with in range. Until i flared. then my husband came home from serving in iraq we moved to CO for a job and i found a great family doc and a rheumy that is great.

I love my doctors, I have been fortunate that they communicate well with each other. I am 40 now. and i miss my family doc i grew up with because he knew me like a book you have read several times or a movie you have watched over and over. I miss the simplicity, I have two and checking for a third auto immune disease, gulf war illness, gerd, ibs, mild depression at times and anxiety, diabetic and a migraines and fibromyalgia. I feel like breakfast and dinner is just pills. and a once a month infusion.
I am sorry you are in pain, but having low tcells would actually benefit someone with lupus. I take an infusion each month to kill my T cells. I am not saying you do not have lupus there are a few types. but lupus is very hard to diagnose because the symptoms can also be similar in many Auto immune diseases, fibromyalgia, and several things. I am not a Doctor. I was very much feeling like a double edge sword, a diagnosis can be freeing and or debilitation.

I feel for you and the struggles that are knocking at your door. when i read there is no cure for lupus on a website and it was the first line i felt crushed, but then i found more information there are many levels, remission periods, it is learning how to reorganize your life and priorities. eating, resting, conserving energy when you have it, finding joy in simple things, keeping to a schedule for bed and wake (that is a hard one)

For years I let my illnesses own me, I recently had an epiphany that they don't ! they are not who or what i am. I have been in probably one of the worst flares i have ever had, and i am pretty much holding on by the grace of God. But I have joy in my life.

so littlesrebel...Do not get defeated before you begin... life is not a sprint, with any auto immune it is a marathon. Remember learn things in baby steps.
you will be in my thoughts.... Find a good rheumatologist, I go to a Arthritis clinic where there are 12 doctors I only see one but it is nice because if something comes up or if you don't fit with your doctor you have options. At this place these doctors see all types of Auto immune diseases i would say the most common is Rheumatoid arthritis at the one i go to. or if you know someone with RA ask them if they like their doctor. Best wishes and good luck with everything. keep us updated on your health. Family docs are wonderful; but if your doc is saying it is auto immune than it is getting beyond their scope of treatment.

may you find a bit of joy in each challenge that comes your way, like an accomplishment, or i got knocked down thats ok... i can always try again tomorrow.