lost and confused lupus or not?

[jenna409]

Hi I have been sick for almost ten years with some sort of auto immune disorder first dotcter thought was lupus and sent me to rhemutology .all of my tests kept coming back negative except for my ssdna was always high during a flare over time sympoms have gotten worse i have a rash that comes and goes on my face wierd swelling some times my hands some times my ancles it varies with the flare ups have had a head ache for months urine has come back posative for blood and protien .i get sore in my mouth but they are not painful have arthritis in many joints .my once beautiful thick hair falls out in clumps ..rheumatologist didmised my symptoms feel like i was talking to a wall.told me i have fibromyalgia and i should see a therapist and learn to deal with is .i'm ready to pull my hair out my self am getting depressed and went for a second pinion this guy didn't even talk to me looked at my file and said he agrees with the original diagnosis .i just feel like they are missing some thing .i have benn etting sores on my toes and now are turning purple when my feet are cold .from what i've read about fibromyalgia it does not seem like that fits the symptoms.if any one has any sugestions on what i hould do now please let me know .

[karajo]

I personally think you should keep trying yet another dr.  It truely does sound like antoimmune of some sort.  

My suggestion to you is to go back to your regular dr. when things warm up a bit.  Then expose yourself to the sun.  Depending on how sunny it is (even if its cloudy) but around 15 min - 30 min. right before they do the ANA test.  If you have lupus, it will cause an autoimmune response, thus causing your ANA to be elevated.  Mine was all over the place including neg.  But we know the ANA is just one piece of the puzzle that has many pieces.   But the mouth sores is also a piece as the joint pain and the hair falling out.  You truly do have symptoms that should warrant follow-up testing.  I would find someone (not necessarily a rhematologist) to follow up on this.  Maybe even an internal medicine dr.  

[elbamom]

Hi Jenna and welcome to the forum. Lot of good ideas here and caring people. The first thought I had after reading your post was to get another doc. Hopefully someone who listens. Can you see an immunologist? It would be good to see one who knows about auto-immune and immune deficiencies. If you don't know one in your area contact the (IDF) Immune Deficiency Foundation at www.primaryimmune .org they can recommend one to you. Lots of good info at the web site too.

From experience, I know that Fibromyalgia is often a diagnosis of last resort. If the doc can't figure it out then it must be Fibromyalgia.
What type of blood work have been done?  Could you be low/deficient in some vitamins?  I would also suggest getting and keeping a copy of all your blood work. That way you know what was done,don't have to pay again for the same test, and have copies to take to a new doc. Keeping good records helps too. I take a spiral notebook with me to appts. full of questions and write down what answers I get. I note the day, time, doc etc. Take a list of your current meds too.

Headaches could be low magnesium. Aches and pains could be low D3. Both are over the counter and easy to get and use. Well worth a try while you look for a more caring and informed doc.

www.vitamindcouncil,org has lots of info on D3. They recommend 5,000IU a day. The optimal D3 level is between 50 and 70 ml. Magnesium is also needed to absorb the D3.
Costco, walmart, etc have both for cheap.

Do you have any allergies to pollen or food?  Have you ever had them tested?

Don't give up! Get informed and keep plugging away at it. Docs and patients should be a team, and when you find one that is a team player it makes a huge difference.
There will be someone who knows what is going on. Until then take care of yourself as best as you can.

Other people here will also have helpful ideas!
Good luck
elbamom