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Possible Autoimmune…undiagnosed

Autoimmune Diseases | Last Active: Jul 24 6:05pm | Replies (58)
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@lilbit123

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)

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Replies to "I’m sorry that you are having to go through all this. I too have been battling..."
melissawolfe1981 | @melissawolfe1981 | Jul 9 9:26am

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🌻

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sommerreign | @sommerreign | Jul 11 7:37am

I had tests done and it was positive for lupus but I never had the rash.
What’s your daughter being treated with?

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lilbit123 | @lilbit123 | Jul 17 7:10am

My update…went to see my Primary this week. Before I went to see him I wrote down all the symptoms I’m having and my concerns. I wrote down certain labs that worried me. I had all my ducks in a row.
Went in there and it started off good. I started updating him on what the specialist were suggesting and that the RA Dr had put me on hydroxychloroquine (Plaquenil) to see if that would help me. I had been on it for almost 3 months with no help. I had gained weight extremely fast and am severely bloated after eating to the point that I don’t eat but one meal a day because I stay so bloated that I feel miserable and full. Plus it made my hair loss worse. Needless to say I stopped taking it a few days ago.
Anyway my primary doctor cut me off (so I never finished talking) told me that he thought it was all nerve damage from chemo and radiation (2014). From that point on any time I tried to bring up a concern it was the same answer. While some stuff could be from that not all is. But anyway I told him about my referral to UNC for 2nd opinion (which they still have not called) his response was my FIL went to the Mayo Clinic in Minnesota and then proceeded for 30mins tell me about that experience. While it all sounded great I’m in N.C. and don’t want to travel that far (he offered to refer me there) said only Minnesota because it’s the best.
So another Copay with no success!!
I’ve noticed that many on here have posted that their Dr’s are treating them for Anxiety. I too have been on Anxiety meds for 15 or so yrs. Wellbutrin and at night Ativan to sleep. I’ve recently started weening myself off the Ativan from 4mg a night to 2mg. I’m tired of medications and I’m scared about how long before 4mg isn’t enough. So far I’m only sleeping half the amount but when I wake up I start praying and it puts me back to sleep. With 4mg I slept through the night but with no meds I stayed awake all night thinking… thank you for venting this long Lol

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