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shoegal's Achievements


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  1. I'm confused, but they thought I had MS for 20 years and I have dsyautonomia and maybe Mito, it's so odd to docs and I have eye issues!
  2. I've never heard that! but zyrtec doesn't make you sleepy?
  3. why are you guys taking this?
  4. But would thermotabs help if you are already having 2,000mg of salt a day + 1,000 of potassium?
  5. I had an old script from my old EP for Midodrine, so I figured now I have insurance I could try it (if I get up the nerve!) My last neuro appt the doc did an appt for thermotabs. He wanted to try them first since Florinef would lower my potassium which is usually on the low end. What confused me first was the thermotabs has 180mg of salt + 15mg of potassium. Basically a cup of milk has more of both, a lot more. I'm already salt loading and having extra potassium to try to get that up, he thinks the thermotabs has more, how? Well the insurance covered the Midodrine but said Thermotabs are not a med, and not proven to do anything useful. Thought it interesting they chose $210 option vs the $11 option
  6. he said I have had enough testing. Ummmm Ive had some labs. a yearly MRI (for a tumor). Not really a lot of testing to me. He didn't even do the BP checks etc. the cardio does. Maybe he was having a bad day? I don't know. I know I went through severe traffic to get there and they wanted me there early. When I was running late they didn't say 'hey it's Ok he's running late anyway" they told me I had to rush. Was 10 hours to get up early, get there, have lunch and drive back. A long day to me.
  7. how do you get the pill to 1.5mg? how do you cut it like that?
  8. I just got my script from my old cardio filled, also have a med fear, I always end up with side effects. The list for this med is long and yuckie too. So it worries me. Hope it works for you
  9. did they do an echo? my IST was already in full swing at that age, I couldn't do sports due to it
  10. The doctor was running very late and was very rushed. He ordered me thermotabs vs my current salt loading/potassium pills. He says this is better, so I'm doing now 2,000-3,000 salt + 1,000 + of potassium. I should go to 180mg salt and 15mg potassium? He ordered a few labs, stuff I've only just had done. So far they are "in range" but the ranges dont mean a whole lot. Just basic stuff like b-12, vit D, ferritan. All just done. When I asked about all my medical problems which are autonomic plus a lot more and other docs have said they think it is mito. He said, well you know you are aging, maybe this is just you are getting old. I'm 33. So if I can't walk, My BP is very low esp when I stand, I almost pass out daily and all the other issues are from "being old"? I expected more info and more understanding. I was disappointed esp given the long drive there and back
  11. I'm scared of this test now, I can be 64/40 already at home, what if they get you too low and you can't get it up? what is the need for the test
  12. they did flights for kids needing to go to hospitals, angel flights are they called, private jets people usually offer up to help, may be an idea? Esp if you have money towards it to
  13. I don't need more headaches :-( I never herd of every other day though, and I get low potassium even with high pot foods so been iffy trying the med
  14. the biopsy was +? now they do DNA testing, not cheaper though I have an issue not processing ketones, which could be linked to a FOD or just another disorder, all under the umberlla of mito
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