Possible Autoimmune…undiagnosed

I think you might do better with a functional medicine doctor who will look at the whole picture. Or an integrative medicine/holistic medicine doctor/naturopath.

You can try to treat each symptom separately but it is hard to get mainstream docs to connect them, in my experience.

The high EBV may be seen differently by a functional or integrative medicine doctor.

The virus may explain this. Also have you had a Lyme test? Was the ANA test (umbrella test for many autoimmune issues) negative?

Thank you for your input🌻 I did have a Lyme test done…2 times actually. The first one had shown some positives but it wasn’t enough to be considered as having Lyme disease & the other one was negative. The ANA was also negative.

Hello it’s sound similar to my situation regarding symptoms I started with balance issues and it progressed to the problem you mention. Going forward I went to a neurologist in NJ and I was misdiagnosed with Frontal temporal dementia. Went to Neurologist in Columbia and they saying that’s not FTD and I’m starting from the beginning . Apparently they don’t know what it is and saying it could be anxiety/depression I keep telling them I’m not depressed anxiety a little but it seems I need to go forward and keep trying to get to the bottom of the situation, unfortunately even with autoimmune diseases they are having a hard time diagnosing Im having pains and body aches and they can only give me medication for the pain all my labs are negative. I’m a a still trying to get to the bottom this issue. I hope you get a diagnose soon and feel better.

@melissawolfe1981 there is controversy about how to interpret Lyme tests. The CDC wants a certain number of positive "bands" on the Western Blot, and certain bands. Some Lyme specialists go by whether a positive band is "Lyme-specific" and consider the test positive even with one band (like the 23). The 41 band is common and not diagnostic, could be from spirochetes in the gums.

I would go on lymenet.org and find a "Lyme-literate" doctor but be cautious about the info on that site.

Thank you so much for this info. I will look into this & see what I can find🌻

I would have your Thyroid levels checked. Ask to have this blood test done and have your TSH, T3-Free, T4-Free, TPO Antibodies checked. These tests were at one time on a normal blood panel, but have been taken off…I never knew I was suffering from Hashimoto’s and Hypothyroidism until I had these levels checked and the numbers for me were off the charts! I’m on Synthroid now and my symptoms are subsiding.

Please visit the “pernicious anemia B12 deficiency support group” facebook site. Your symptoms are much like mine and normal labs are not uncommon with this disease. Files in the site include a wealth of information. Best wishes for your recovery!

I’m sorry that you are having to go through all this. I too have been battling these symptoms. For years I’ve been going from one specialist to another. I’ve had numerous labs drawn and they keep saying they’re normal. I have random flare ups where my feet are burning or tingling. Throbbing in my legs, pain in my neck and down my arms, into my hands…sometimes my arms and hands go numb. I get headaches mostly on the left sometimes in right side and my vision has gotten worse. The only reason my rheumatologist is still testing me is because I mentioned that when taking oral steroids I don’t get pain. I’ve had the steroid shots in my neck and lower back which did not help just caused more flare ups. I recently had a follow up with pain management and they are referring me to UNC Chappel Hill for a second opinion because they’re at a loss. I’ve tried meds like Lyrica and others and nothing helps. It’s very upsetting but don’t give up. I’ve had normal labs and yet I’m still getting sent to specialists, I’d check with your insurance company and see if you have to have a referral to see a specialist. If you don’t then I’d schedule my own appointment with one. You don’t always need a physician to see a specialist.
My daughter has a friend that has Lupus and she went through the same stuff we’re dealing with. After years and a good Dr she was finally properly diagnosed. (She never had the rash)

Thank you🌻 I’m sorry you’re having to go through this also. I’ve also been prescribed Cymbalta & it did nothing for my symptoms. The vision is another issue…sometimes with my left eye it’s like it doesn’t want to open all the way & at times my eyes feel like they’re bouncing if that makes sense. I ended up seeing an eye dr & my vision is almost perfect. I won’t give up until I have answers because something is wrong. To go from perfectly healthy & within a year having to fight just to do the simplest tasks is not normal. Prayers to you on your journey & keep me posted on how things turn out for you🌻

Thank you! I will definitely keep you posted as I’ll be watching for your updates also! Prayers for a speedy recovery and some answers.