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Autonomic Dysfunction + POTS + LUPUS + Tachycardia = Rejection Letter

Posted by annaabernathy @annaabernathy, Feb 15, 2024

Autonomic Dysfunction + POTS + LUPUS + Tachycardia = Rejection Letter

I have had tachycardia and Lupus and fibro for at least 10 years. I was recently diagnosed with POTS, Autonomic Dysfunction and possibly MS. My PCP and Cardiologist suggested I go to the Mayo Clinic. I was SO hopeful I’d get accepted because of how complicated my nervous system is, but I got the awful denial letter for an appointment with General Internal Med. I started on Beta Blockers, but I also have hypotension and those made it worse. So my cardiologist put my on Corlanor (which isn’t supposed to mess with my BP, yet with POTS, I’m constantly feeling like I’m going to pass out several times a day.. The directives from my Cardiologist are to have a high sodium diet and compression socks. This seems so contradicting because I am taking meds to lower my extremely high resting heart rate, a med to raise my BP, and with having a high sodium diet with Lupus, I retain all of that fluid which causes the fibro to be extremely painful. I did a self referral to the Mayo Clinic in MN and chose General because, at this point, I have no idea who I’m supposed to see with all of being nervous system related. Neurology refers me to cardiology and vice versa. It’s as if neither know what to do, and my only hope was Mayo. Does anyone have any success stories with appealing a denial for an appointment or what I should do?

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applesforall5370 | @applesforall5370 | Feb 20, 2024
In reply to @applesforall5370 "I lost my job because I could not get into a Neurologist in Michigan. After many..." + (show)
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I lost my job because I could not get into a Neurologist in Michigan. After many months. I called Mayo
I was not sure what the issue was so I ask to see an internest, best thing ever. I got a appointment in 6 weeks. I had alot of thing going through my body. I had been sent to 7 different doctors. All of them gave prescriptions that made things worse. We spent almost 2 weeks. The first thing I was way over medicated. They sent me to several doctors from head to toe. I was diagnosed with Celiac, Migraines, Fibromyalgia and Auto I immune disease. Set me home with a plan.
Come to it my mother was diagnosed at Mayo 1966. She had Migraines, Lupus, Kidney and Lung disease. I never knew what she had. I did know she was going to have a Kidney Transplant but died before it was none. She died of Congestive heart failure at 50ys old. I would walk crushed glass to get to Mayo in Rochester.
I do I completely trusted everyone there.

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Thank you. I am so upset with our health care. We need to advocate for your self and loved ones.

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applesforall5370 | @applesforall5370 | Feb 20, 2024
In reply to @butterfly9 "I don’t know of anyone else has issues with their sodium. / water balance. ??? I..." + (show)
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I don’t know of anyone else has issues with their sodium. / water balance. ??? I hope one day for my daughter’s sake. They figure me out better 🙏🏻

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If you're sodium is low they told his to eat dill pickles. Physician from Mary Freebed in Grand Rapids. He had a concussion and he was getting therapy. It do work.

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tracer3 | @tracer3 | Jul 30 7:34pm

I’m having similar issues, but fighting an early-onset Parkinson’s diagnosis now, following tilt table tests, confirms small fiber neuropathy, severe autonomic dysfunction (I passed out 3 times yesterday), truly horrid heat attacks with patchy sweating, spasmodic torticollis, POTS, chronic pain and dystonia throughout. I get Botox in my feet, shoulder, and calves every three months. I didn’t think I had neuropathy but I do have pain in the hard spots of my feet (balls, heels, and burning in ankles). I had severe sepsis in 2020. The neuromuscular doctor thinks this is secondary to PD but I’ve never heard of it coming on this early (within a year, at age 50). I’ve had elevated CRP for decades and severe anemia. They suggested testing at Mayo for an occult cancer but it’s really expensive and looks more like MSA. I pray you get some answers. I never considered that my foot pain could be neuropathy, but the QSART was positive and now I wonder — whatever it is, my entire autonomic system is out of whack and I’m sick of all the medications that really don’t help.

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