Undiagnosed - autoimmune?

Have you been tested for Fibromyalgia and Lupus?

Wow! Thank you! This was super helpful! I’m willing to do as much research as I need to if it means I eventually get an answer. Thank you for sharing your knowledge!

I have not been tested for either (as far as I know). I went through my blood work and my double stranded DNA test is at an 8 - so considered indeterminate. If I’m reading right that would be the test for Lupus but blood work would need to be at a 10? I’m still learning so much so I may have some of my information interpreted wrong

@amcivor Autoimmune diseases can take years to be diagnosed, unfortunately. There really is no single blood test that will give you an answer.
https://blog.uvahealth.com/2014/10/31/detective-work-autoimmune-disease/
Take photos of rashes, keep copies of hearing tests and doctor notes. Try to keep a journal or log of any and all strange symptoms that keep coming up.
Are you working with a good doctor who is interested in searching for an answer?

I went through similar if not almost identical symptoms as you & was I was 1st diagnosed with a Meiners Disease but when my ENT retired the head of the whole ENT dept. ran a bunch of tests on me & sent me straight to the best neurologist in our city. After 3 horrible bouts of this weird illness I ended up paying for my own blood work & a very high reading for both R.A & C Reactive Protein popped up & I also found out I have a variant of the MTHFT gene which can cause nerve system problems because my vitamin b's do not cross the blood brain barrier correctly. I have small nerve neuropathy, hence the tingling hands, feet & all up to the neck. Just recently I have learned the reason for the strange feeling of complete fullness in my ears (like cement was poured in them & ringing out of my mind) was & is because of swelling up both sides of my neck to my ears. This was & is due to infection in the lymph nodes in the sternocleidomastoid area. I am being tested for so many "out of the box" things now because after 38 years of trying to figure this out it seems, including the RA symptoms that I have either have a deep anaerobic infection deep in my lower intestines & I do have to much heavy metals in my bones. I know this all sounds really bizarre but true. I have been to many, many specialists & all are & have been scratching their heads trying to figure out what is still wrong but I am now working with a functional medicine doctor. If you can find a good functional med dr. & you can afford to pay them as they usually do not take insurance you can get to the bottom & get some real relief. I have only done metal chelation so far but is has actually taken some of my extreme long bone pain away & brought my RA numbers down. I have been to 3 very good rheumatologists & they too also did not believe I truly had RA & all the meds I tried did nothing to me except make me sicker. Finally, there are medical reports coming out proving that infection of some sort is the cause & this is what I have been telling all my doctors since it started so long ago. If you can remember if you had a flu bug or cold, etc. when you 1st became ill with autoimmune that would be helpful to your doctors. I did have a huge infection due to having a c-section a year before the autoimmune issues took over my body & my whole life. Please please look into infection, microbes, all types of yeast or fungus, etc. & you will possibly figure this out & kill the beast off. I swear, when I read what you have gone through, I saw & felt all my weird issues including the heart thing. I am in Colorado & if you ever want to know more I would love to help you. I am not sure how this site works but filling you in with more very important stuff could really help you. I do not know if I am allowed to give you my phone#? I really do not want to see anyone else go through what I have for so many years. I could give you my email if you want to write me also but again I am not sure what this site allows. I hope we can get to a phone conversation so I can help guide you a bit. Oh, I am Lori Banta & I can not bare the fact that you are going through this horrible situation. By the way, it can go away & come back too.

@ginjax28 just a quick note: don’t share information, like phone number and email, in your discussion. This is a very public site and we want to protect members from any harassment. You can share information through private messaging. Just click on the name of the person you want to communicate with. Their profile will come up with a link to private message them.
I think I’ll read the rest of your post in the morning. Is that OK?

Yes, thank you for sharing this info. with me. I will be very careful & just so you know I have only reached out to 1 person.

I am wondering if you’ve had your Thyroid levels checked. It’s a simple blood test that tests your thyroid to see if you’re hypothyroid or hyperthyroid. It will also check your thyroid antibodies. It sounds to me like you have a thyroid problem and could also have Hashimoto’s. I have both. If you have your blood tested for these things, ask to have your TSH, T3-free, T4-free and thyroid antibodies tested. This will show whether or not you have hypothyroidism or hyperthyroidism. I was having heart palpitations and weight gain and found that I have hypothyroidism and Hashimoto’s. Taking 112mcg of Synthroid and 5 mcg of cytomel. I am healing slowly! Blessings to you on your health journey.

This has been very helpful for me as well. Thank you.

Hi all. Gosh, you are dealing with such overwhelming issues. I don't know if my comments are even relevant here but I developed some symptoms of dysautonomia about 4 years ago. I had never heard of it and none of my symptoms are any you described. I felt so 'sick' nothing specific - just an overall sick. I couldn't sit because I couldn't hold my head up so I took to my bed. My body temps wouldn't regulate so I would suddenly feel like I was on fire or I was chilled to the bone. For 6 months I was frozen to the bone and could do nothing to warm up. This was happening along with the other stuff. After seeing 7 specialists and my pcp I found a neurologist who recognized what it was. I went to a dysautonomia specialist who performed some tests and did blood work. The blood work showed I had been exposed to mono at some point in my life (I'm 72 and never had it) but she said exposure was enough to create these symptoms. Also she did a bp test in the office. I lay on the table, had my BP recorded, then sat and it was recorded, and then stood up and it was recorded. My BP dropped when I sat and stood which, of course, isn't normal. I was placed on alpha lipoic acid, famotadine and mestonin. And an important part of help was to maintain an anti-inflammatory diet.
I don't know if any of this helps and may be way off the mark for your issues. There is a long list of symptoms of dysautonomia- I just mentioned the ones that affected me.

I wish relief for you all.