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POTSie78

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  1. I saw Dr Cheshire in Jax Mayo's Neuro department. He deals with dysautonomia but couldn't help me. He wants me to see their cardiologist because I had an abnormal exercise tolerance stress test. I haven't gone yet because I just lost my insurance since my employer let me go over all this. Once I figure out getting insurance again I will let you know who they send me to.
  2. Sorry you're going through this. Not sure if this helps any but here's my experience. I am not anemic and haven't had any hallucinations like that but I do see shadows and flickers in my peripheral vision of something moving even though there's nothing there. I also see sparkles all over my vision kind of like looking at a 4th of July sparkler. All of which comes and goes. I was diagnosed with occular migraines.
  3. I finally heard back from Mayo. They want me to see their cardiologist but said I refused so I need to go to cardiac rehab. There was definitely a misunderstanding because I did not decline seeing their cardiologist. But...now I can't because I lost my insurance 😒
  4. Thank you for the advice @CJ65. I will check out that site. 😀
  5. I haven't had any experience with Propofol since being diagnosed with dysautonomia but about 6 months prior I had a HIDA scan and EGD and they ended up taking my gallbladder and then did a rectal surgery all with in the same week. They knocked me out 3 times and I haven't been right since. I continued to get worse until I went to the ER with stroke like symptoms 6 months later and now diagnosed with POTS. I've had many years of POTS like symptoms off and on but nothing that wasn't manageable (as a child my Drs thought i would out grow it.) From what I understand these kinds of procedures can trigger symptoms. I am hoping this is not a flare for you and that whatever it is passes quickly.
  6. Hi @Pistol. Thank you for the encouragement. It is nerve wracking being in this position and your kind words are soothing. I briefly looked into SSDI knowing this day was possible but I haven't pursued anything at this point. I was trying to remain hopeful to get things under control and maybe a bit unaccepting that things would really end up like this. I appreciate your offer to talk this through and I will take you up on that when I have a little more information. I am supposed to be contacted by the insurance company about switching to LTD. As for the ILR I was charged $50 for 2 months worth at my EPs office and they said I would have a monthly payment. I believe that is what he charges to monitor it.
  7. I need to vent.. As I've mentioned in other posts I was diagnosed with POTS by my Electrophysiologist and then went to Mayo for more testing. Its been nearly a month since I last went to Mayo and I have not heard from that dr who set up all those tests. I sent a message to my Mayo team asking whats next about a week ago. I know from reading the notes that I had an abnormal stress test showing cardiac impairment due to stroke volume response and severe dyspnea. I was also diagnosed with 6 different skin problems. I'm quite frustrated because I've begged my EP and primary to do something to get me back on my feet so I could go back to work before my FMLA expired. I was told to wait to see what Mayo had to say. So as of today I was let go by my employer and can not afford cobra. I have an implanted loop recorder in my chest thats monitored by my EP but as of the end of this month I no longer will have insurance. Ugh. Its such a vicious cycle when you struggle to work and lose your insurance to treat the reason you struggle to work. I do have a short term disability policy thats good for another month to help pay for my ungodly amount of expensive medication and cpap supplies but after that hopefully I will be approved for the long term policy. I am so discouraged and feeling trapped because I haven't been able to get my health under control.
  8. I don't have a diagnosis from Mayo yet other than from the dermatologist. I am still waiting to see what the neurologist says about the tests he ran so far. The information i have is from the notes that have been put in my file. At this point I don't have a follow up appointment scheduled.
  9. Thank you for the all the information. I'm not sure what SFN is but the dermatologist at Mayo diagnosed me with ETR rosacea, spongiatic dermatitis, hyperkeratosis, Scalp pruritis/foliculitis and some disorder with my all my nail beds.
  10. For the past year and a half I've been treated for dysautonomia/POTS by my electrophysiologist who diagnosed me after doing a TTT and ruling out other cardiac issues. Recently I went to Mayo and went through several tests. They had me withold my medications for 2 days and did their autonomic reflex screen, exercise tolerance test and some bloodwork. Everything is coming back normal now except I have exaggerated heart rate reaction to exercise, severe dyspnea, my aerobic capacity is below normal and now I have 5 different skin diagnosis?? My paraneoplastic panel and tryptase levels are normal. I was not able to complete the 24 hour bp monitor because of faulty equipment. I am quite confused by these results and still waiting to hear what Mayo says is wrong with me. Has anyone else experienced something like this?
  11. My mother has it. Its caused by sarcoidosis in her case. It also affects the roof of her mouth.
  12. Sorry I don't have much information regarding success but I am currently being seen by the Mayo clinic in FL. I've had one appointment so far and will be going back next week for a bunch of tests. The doctor seems to be more interested in my fatigue than anything but is putting me through their autonomic reflex and cancer screening. I have already been diagnosed with POTS by my electrophysiologist so I am hoping to get a little more detailed information about whats actually going on with my body. The dr is nice and asked what specialists i would like to see in addition to him and he set that up. The only problem I've seen so far is that when reading their version of my medical history its not accurate but thats fixable. I have to say I've been very lucky to have 2 really great cardiologists (EP and an Invterventionalist) but I am hopeful Mayo can dig a little deeper into my situation. I will keep you updated as I spend more time there.
  13. My diagnosis of dysautonomia came after I had stroke like symptoms in 2020 and spent 3 days in the hospital. I had kaleidoscope vision, slurred speech and weakness. After my vision returned I then had a headache set in. After getting out of the hospital I was sent to an ophthalmologist who diagnosed me with occular migraines that can occur without pain. I was told by the ophthalmologist that these are neurological. I was also told by my PCP that there is recent research that migraines could be TIAs that don't leave permanent marks like usual TIAs. So to me it sounds like there's various causes. I was also sent to a cardiologist who then sent me to an electrophysiologist that diagnosed me with dysautonomia and then eventually said that I have POTS. My EP has been treating me with propranolol and Gatorade. I also take amitryptiline, topirimate, Singulair, loratidine, aspirin and crestor. I also take imatrex and 800 mg ibuprofen to break my migraines. My symptoms are not well controlled so my EP implanted a loop recorder becausw i have an arrhythmia and my PCP has me wear compression socks. I also went to a specialist at Mayo last month but he's not sure I have POTS because he did a poor man's ttt and didn't see the response you usually get with POTS. However I was being treated for it at the time and have to go back for a hole bunch of their tests off all my meds. I have bp and hr thats all over the place, presyncope, severe sleep apnea, lots of gi issues and now skin problems and trouble walking. From 5th grade and all the way through high school I actually lost consciousness several times. I have 20+ years of migraines and gi issues since birth. I don't have much for answers but I am hoping to soon and will keep you posted.
  14. I'm sorry you are going through all this. Unfortunately its very common to be dismissed by a doctor. The neurologist i was seeing disagreed with my electrophysiologist that diagnosed me with POTS through several tests.. He said I couldn't have dysautonomia because I am not diabetic. He talked about doing an MRI of my lower spine because I was born with spina bifida but he said he didn't want to open that can of worms. Ugh! So I am now seeing a different neurologist that specializes in dysautonomia and is putting me through more specific autonomic tests. Don't quit advocating for yourself. You know when something isn't right ith your body.
  15. I was told to wear them all the time except when sleeping.. I too get muscle aches but I don't know if its normal. I assume it is since the garments limit my movements somewhat and it goes away if I stop wearing them for a while.
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