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About JimL

  • Rank
    Advanced Member
  • Birthday February 26

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  • Gender
    Not Telling
  • Location
    East Valley Phoenix
  • Interests
    Since this crap hit, not much, but I used to ride a motorcycle, play drums and fix anything.

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300 profile views
  1. I've had that happen, but not consistently. I've wondered if it's related to blood flow, meaning if blood pools in the lower extremities, maybe it's not where it should be in the head.
  2. My experience is limited in that I went there for a specific problem to a neuro-ophthalmologist and it was a negative experience. I’d never go back to that department again for sure. I’ve read good things about other areas of Mayo. Not sure about Medicare. I have BCBS. I live a few miles away and I know that a lot of retirees from my town go there for GP stuff.
  3. JimL


    I don't know what it is. The tests at the neurologist came back normal except for a slightly elevated SED rate. I go through phases with this. It's not like I feel bad every second of the day and can't function, but it varies a bit during the day and sometimes over time. Stomach still feels off on one side, I still get brain fog at times. Skin is dry, still have double vision. I know they're missing something, I just don't know what it is. I had high hopes. Now I just feel like I am supposed to suffer.
  4. Not surprising at all. I had spine surgery 7 weeks before pots and have had 3 fusion surgeries since 2012. The pots surfaced about 7 weeks after my lumbar fusion where I had a CSF leak during surgery that they fixed. It was alleged that a bone spur caused it. I think it was iatrogenic.
  5. JimL


    I have to contact them, which I will this week. I’ve had cervical fusion 2x and lumbar fusion once, so who knows RE neuropathy.
  6. JimL


    I can’t do this for 10 years. Well, maybe I can, but it’ll be miserable.
  7. JimL


  8. JimL


    Thanks Pistol. Sometimes I feel like I’m searching for a black cat in a dark room who isn’t there. They didn’t check for iron, but I did a CBC and complete metabolic profile last month and all was normal.
  9. JimL


    It’s crossed my mind, but I don’t know much about it and the doctors never bring it up, but I’ve gotten looks just bringing up the other stuff. If it doesn’t show up on a complete metabolic profile or CBC, they don’t get curious or worried. This whole process has readjusted my thinking on the medical profession. It’s a small percentage of doctors that are competent, caring and curious.
  10. Been a while since I've posted. Thought I'd give a follow up. I went a neurologist that specializes in POTS and dysautonomia. I've had the skin biopsy, EMG and now I had a battery or blood tests this week. After the EMG he said I definitely had neuropathy, so he sent me fort the test. Thyroid, 2 hour glucose tolerance with A1C, ESR, RF, Homocystine, Uric acid, Vitamin B-12, E, D, Methylmalonic Acid, ANA, Sjrogens, ACE and IgM, IgA and IgG. The only thing out of range was the ESR. It was 24. The others were in normal range or negative. In the last couple months, I've started to get joint pain in my hands, wrists and shoulders. especially the day after doing any kind of activity where I use my arms, sometimes my hands hurt so bad just trying to close them like a fist. If I don't work with them, in a few days it's better, but still sore. I am tired a lot too, even if I sleep 6-7 hours and I do use a CPAP, It's almost like when I didn't use a CPAP. The tachycardia stopped about a month and half after I had cervical fusion. but the malaise, occasional brain fog, binocular diplopia and now the joint symptoms remain. I haven't had a follow up since as the blood test results came back Thursday. I don't know what the deal is. Still think it could be PMR, PNS or MS. Thanks for listening. I know my symptoms pale in comparison to others and I probably function a bit better. I almost feel ashamed to vent here. It amazed me how folks here soldier on when they have much worse conditions. I don't know how they do it. I'll let you know where I am going from here.
  11. My omron has to be 20 years old and it still works. I enter the info manually.
  12. Check out a social media site called Nextdoor. You can connect to people that live near you for recommendations or advice. People ask for things like that all the time.
  13. I had blood tests for B vitamins and they were in the normal range. Stenosis, spurs, bad disks, the whole shebang. Still digging to china to figure this out.
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