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Autoimmune? Undiagnosed and don’t know where to go next
Autoimmune Diseases | Last Active: Oct 12 11:44pm | Replies (166)Comment receiving replies
@heatherdoney74 I’m so sorry you are going through this. I have had many of the symptoms you have described but not all. I have Sjogrens Syndrome, Lupus, Myasthenia Gravis and Rheumatoid Arthritis. The debilitating pain is so awful and people who don’t have it don’t understand. Hang in there and don’t give up fighting for answers. After the birth of my three children and going thru menopause the last three years have been the absolute worse and most painful times for me. Seems like hormonal changes have played a big role in affecting my diseases. Start documenting everything and make a three ring binder of your different doctor visits. Call and get copies of the office visits and put in your binder. Do whatever you can to get to Mayo Clinic. I have gone to the one in Rochester and I’m sure they can get to the root of your issues and figure out how to manage your pain. I know you feel like you can’t go but try to.-see if a fam member could go with you. I fought my hardest to get up every day. I was either going to be in pain in bed or in pain doing what I needed to do. Either way, I was in pain. Drink lots of water, stay away from artificial sweeteners. Caffeine triggers migraines for me. Are you vitamin deficient-has your PCP checked that? What’s your GFR (kidney functions)? I had trouble breathing that kept getting worse and it ended up being acute kidney failure. Keep fighting for answers. Praying for you.
Replies to "@heatherdoney74 I’m so sorry you are going through this. I have had many of the symptoms..."
Dear Shellyleon thank you. Your suggestions are correct as far as I am concerned as I have some of your medical problems and a few more of mine; and yes, I have tried and done as you have and you are right including the kidneys.
Hi Shelly, sorry to bother you, quick question. Did your heart rate ever jump around between the 40s and 150s when you would try to get up or move? I get very dizzy and my HR goes nuts whenever I try to change a position. Just wondering, with that and the chest burning and right arm numbness I can never decide whether to go to ER since it seems to happen daily for the last week.
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Wow, you have alot going on. I have felt that there is more than one thing. It helps that someone knows what this feels like. I have folders of the appointments, but I will turn it into a binder. I am trying to get through a few more tests before i go to Mayo because once i go there, i have to pay cash, which i haven't been able to work in 4 months and I'm a single parent, so trying to get as much done through insurance as possible. All of my vitamins are good, most all bloodwork is fine, high cholesterol and sometimes one or two markers of liver or kidney will be low or high, but doctors say not to worry. I have found a holistic doctor with a MD background as well, so i am hoping he can help. Not being able to breathe is the scariest, more than the pain. Thank you for responding and your prayers and I will also be praying for your continued recovery and improvement. I'm trying to take it one day at a time.