Lupus Support Group

Oh one more thing I forgot to add. I also get a lot of muscle twitchig going on, could that be a symptom as well with an Auto Immune Disease?

Have you been tested for MCTD? Alot of the symptoms are the same as lupus. Usually you will have negative testing for the Lupus specific tests but come up positive for the Anti-RNP. Muscle twitching isn't really a symptom of Lupus but it is usually considered benign unless accompanied by other neurological symptoms.

Just testing for ana alone is not the best. You should have a full panel done for autoimmune. hugs

I would get a refferal to a neurologist and they will run a very large autoimmune panel on you. I remember being in your shoes and all the testing, questioning, I really do feel for you. My best advice would be to fight for the right dx. I had to see many docs, actually it was finally an NP who helped me, to find the right one to hear the right thing. Keep a journal of symptoms, diet, exercise and such. This will be helpful for any specialist. I have many things similiar to what you experience, but don't look at my profile; you don't have that many issues. At least I wouldn't think. Gulf War vet here, highly suspect that is the root cause of all my issues. Hang in there, dx takes a long time, but you can get it and then you will have the knowledge you need to start feeling better. I wish you the very best, love, peace and courage on your journey, Kim

Hi Mojos,
I had all the same symptoms as you when I first got sick and was tested and diagnosed with anti-phospholipid disease. It is actually a blood clotting auto-immune disease but can have almost the identical symptoms as Lupus. One of my symptoms that lead my rheumy to test me for this disease was the numbness and tingling I had in my hands/fingers/feet/toes. The test I was give which is very specific for APS was the Beta 2 glycoprotein test. You may also have UMCTD (undifferentiated mixed connective tissue disease) which like Allison said, has alot of lupus symptoms but tests are negative for it. Alot of people with mixed connective tissue disease have raynauds which is the cold hands/feet. And, medication is very similar to treat it. Plaquenil is usually what they put people on who have MCTD or Lupus. AI diseases can be very hard to diagnose and blood work can be like hitting the lottery. See if you have had your C3 C4 levels done. Usually, when inflamation is going on your C4 will be low. It sounds like you have some type of AI disease going on but it can be very hard to figure out which one it is. The true test when experiencing rheumatic symptoms is a trial of plaquenil and if after 3-6 months you feel better, there is the answer. The problem is getting dr.s to try a med on you to SEE if you feel better. They seem to rather you suffer until they see something on paper.

Have you had your thyroid checked? Thyroid issues can have similar symptoms to lupus. Lyme disease can also have many lupus like symptoms. Have you been checked for that? If you have your blood work, let us know what you have been tested for. If you havent seen a rheumatologist and a neurologist, you should probably see them. I would say a rheumy first. And, please be tested for APS.... Feel free to message me if you have any questions about it. I have primary APS and have now developed Lupus. Hang in there. Your not nutts. Something is wrong and you cant give up until you get answers..Most of us know the frustrations but once they figure out what is wrong and you get the proper treatment you really can feel better.
Hugs
Melissa

I can't really add much in the way of advice, but at least it may help to know there is someone else here in a similar pickle.

I had a negative test for lupus years ago, but I'm getting all these symptoms now that are very typical of lupus. I am only now learning that you can't eliminate lupus as a possible answer just by running one blood test. The doctors I have been seeing don't seem to know that.

Read all you can, that would be my advice. When you go to see a doctor, it helps to have some knowledge of your own. And try not to go bonkers over this, it will only aggravate your condition if it is lupus. I've had symptoms like yours for years and years, and I'm still kicking around.

I'm sorry it's taken me a bit to respond, I don't have a pc at home like I used to. (pouts)

Anyhow, I had some Anti something test done, and of course it came back negative, but I know my body is having all the symptoms, something is wrong, but nothing seems to show.

Naturally, the nurse practictioner who they keep giving me thinks I'm just some sort of hypocondriact, because I keep getting negative results. It's very upsetting, because I get the pain, swelling, nausia. I have redness and bumps across my cheeks and nose, ect., but it doesn't matter if they don't see anything on paper, they don't believe I'm really sick.

Usually they will test for RA, Lupus, Sjogrens, and others depending on your symptoms. There are some forms of arthritis that sometimes blood work will come up negative like AS (Anklosing Spondylitis). There are other forms of arthritis as well. Judging by your symptoms everything is fair game right now with a neg ANA so far. You probably just need to give it 3 months and re test, see what comes up.

ps in the meantime I would try to get on a trial of Plaquenil to see if your symptoms improve, if it does then you are on to something.

Keep looking for answers I have the twitching and I have Lupus each and everyones symptoms manifest in different ways. I also went many many years with a neg test result so don't give up be your own advocate. Good Luck