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Posts (8)

Tue, Nov 12 11:59am · Undiagnosed and don’t know where to go next in Autoimmune Diseases

@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.

Tue, Nov 12 11:59am · Undiagnosed and don’t know where to go next in Autoimmune Diseases

I did not have that happen. My blood pressure was all over the place but I think that was a combination of my kidneys not functioning correctly for awhile and all the meds I was on. You definitely want to get that checked out-that seems like a big fluctuation. Keep us posted.

Tue, Nov 12 11:59am · Undiagnosed and don’t know where to go next in Autoimmune Diseases

My local hospital allows us to call in and Ask a Nurse questions about symptoms we have. I know what you mean about not knowing when to go to hospital. I know it’s hard with money challenges but I always made the decision based on wanting to be around for my children. Better safe than sorry. Sending prayers.

Mon, Mar 11 8:17pm · Worsening diplopia with no explanation in Autoimmune Diseases

Hi @beka i am happy to help and answer any questions! I believe my double vision was different, although it’s been about 30 years since I had that symptom. It was side by side and I think it went away when I closed one eye. The acute kidney failure came out of nowhere and it was diagnosed as lupus nephritis; glomerulonephritis. I’ve been on cell cept, prednisone, and plaquneil since and am doing much, much better, although my labs have been up and down over the past year.

Mon, Mar 11 6:19pm · Worsening diplopia with no explanation in Autoimmune Diseases

Definitely talk to a neurologist about Myasthenia Gravis (MG). That’s where all my issues started-double vision and extreme extremity weakness when I was 17: after the birth of my first child (28), I was diagnosed with Sjogrens Syndrome and had major flare ups after the birth of my next two children. Then at 47 while going thru menopause I was diagnosed with Lupus and RA: I went into acute kidney failure (stage 3, almost 4) at 49. It’s been a rough road but find a good doctor to help you manage it all. The Mayo is fabulous if you can go there! I’ve noticed that a lot of my issues revolved around times in my life where I had hormonal changes. I hope you find answers! God bless!

Nov 8, 2018 · Thymectomy and autoimmune diseases in Autoimmune Diseases

Hi John, thank you for your reply. I'm wondering if having a thymus gland removed causes autoimmune diseases. I'm wanting to know if there are others who have had their thymus gland removed and then later been diagnosed with autoimmune diseases. I'd love to hear what diseases they have been diagnosed with and how they are doing. I was diagnosed with Sjogrens.Syndrome first, although I mostly had joint pain that would come and go with flare ups. Just recently the Sjogrens attacked my kidneys and The nephrologist said that if I had waited much longer I would have been on dialysis. It's been a tough year but the meds have kicked in and am stabilized and doing good.

Nov 7, 2018 · Body odor without sweat -- Sjogren's Syndrome? in Autoimmune Diseases

I was diagnosed with Sjogrens at age 28, after the birth of my first child. I haven't experienced the strong body odor you mentioned and, until recently, I hadn't experienced extreme dry eyes and mouth. I am on lots of meds currently and was wondering too, if it's the meds or Sjogrens causing the dryness. One thing I wanted to share with you about the Sjogrens is that after the birth of each child anf through menopause, I had horrible flare ups. It seems hormone fluctuation is a trigger. Wishing you the best.

Nov 7, 2018 · Thymectomy and autoimmune diseases in Autoimmune Diseases

I had a thymectomy in 1985 when I was 17 years old to treat myasthenia Gravis. I went into remission about 4 years later. After the birth of my first child in 1996 I was diagnosed with Sjogrens Syndrome and since then Rheumatoid Arthritis and Lupus. Has anyone else who has had a thymectomy for myasthenia Gravis been diagnosed with autoimmune diseases?