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JimL

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  • Content Count

    321
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About JimL

  • Rank
    Advanced Member
  • Birthday February 26

Contact Methods

  • Website URL
    https://www.mymotorrad.com

Profile Information

  • 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.

Recent Profile Visitors

216 profile views
  1. 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.
  2. JimL

    Update

    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.
  3. JimL

    Update

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

    Update

    https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/symptoms-causes/syc-20376539
  5. JimL

    Update

    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.
  6. JimL

    Update

    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.
  7. 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.
  8. My omron has to be 20 years old and it still works. I enter the info manually.
  9. 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.
  10. 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.
  11. Life isn't fair. Never was, probably never will be. Choose well.
  12. It hasn’t helped. My wife thinks most medical problems are psychosomatic. One of her brothers had appendicitis and her mom had to take a shower before taking him to the hospital. Their attitude is just get over it or yourself. Add that to the list of clueless doctors and I’m on my own.
  13. The spots I have aren't that prolific. Some on the tops of my thighs and I set them on my right arm near the elbow. Funny thing about Sjogrens is that a coworker in my building has it. I have to wonder about the environment I work in. It's the school of life sciences at a university. It took her a while to figure it out, or a doctor. She went to Mayo eventually and they figured it out. She works half time now. Lymphoma would suck. That's scary.
  14. Right now I am seeing a neurologist that specializes in POTS and Dysautonomia. It's been slow. I had one visit to go over my stuff, one visit for skin biopsies and one scheduled for EMG. Based on the results, he'll order certain blood tests and other tests. I am hopeful that Dr Levine can figure this out. I don't know why this is happening, why i would get X, but a few possibilities come to mind, with diplopia being the lynchpin. PMR/GCA, Sjogrens and PNS/Carcinoid top the list. Of course MG could do it too from a PNS standpoint with a thymoma. I suppose MCAS could cause some of my symptoms, but I don't think all. I've have a lot os stiffnesss in my hands, wrists and shoulders. Thing is, I've have skin issues that my PCP said could be vasculitis, sent me to a vascular doc, who didn't find anything other than venous insufficiency due to previous DVTs. PMR/GCA is a form of vasculitis and the thing is, some things can go subclinical, meaning they don't show up on tests all the time. Only 50-70% of people test positive for the basic test for MG. My ophthalmologist only ordered the basic test, which came back normal and stopped there. There are four other tests. It's rare people with MG pass all four. I just don't get the complacency. I feel like crap most of the time, I see varying degrees of double vision and get pain in hands, wrists, shoulders and sometimes hips. Anyway, that's about it.
  15. I have binocular diplopia. Went an ophthalmologist and she confirmed it, but sent me to a neuro-ophthalmologist at mayo. That Dr was like, oh, you have 4th cranial nerve palsy and have had it for awhile. Go back to your regular ophthalmologist when it stabilizes. No curiosity as to why as I've never had eye problems in my life. I still have it and it varies, but the only thing fairly consistent is if I look to either side, my vision separates. I’ll never go back there again.
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