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JimL

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  • Content Count

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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

164 profile views
  1. Life isn't fair. Never was, probably never will be. Choose well.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. My temps are almost always 96.8-97.1 every morning. To me, that's low. Since my most recent cervical fusion, my standing pulse has gotten better, but I still feel crappy, still have abdominal pain and discomfort and still have diplopia. My advice is find a doctor that knows about what we have. There is a list here of doctors across the world that deal with POTS and DA. It might be worth a try. Look at the top of the page under Physicians.
  7. I’m in a similar place now. Docs are missing something. I just started going to a neurologist that specializes in pots and dysautonomia. Hopefully he’ll get to the bottom of it.
  8. in order to detect a blood clot they have to use a tracer/dye. A plain X-ray won't tell much and nothing about a clot.
  9. JimL

    Update

    No I haven't. Prior to my issues, I was doing Keto for 16 months and lost over 160lbs. 170+ at one point. Funny thing is since about 6 weeks after my neck surgery, I've put on 10 lbs, maybe a bit more. According to the HIGI machine at the supermarket, I've also gained about 6lbs LBM since my neck surgery. I am starting to wonder if my cervical issues have caused all of this. Doesn't explain the diplopia though.
  10. JimL

    Update

    I have the most problems during and after my third meal. I wonder if I have some sort of gastropareisis. Not full blown, but slows stuff down enough to cause problems.
  11. Sounds like it could be a cervical issue with a nerve.
  12. I wonder if it's something to do with the vagus nerve as that controls the stomach and part of the intestines. Something in the feedback gets screwed up or maybe something like MCAS? DK. I find that sometimes my diplopia improves after eating. Weird. Anyway, I hope someone chimes in with a cogent answer.
  13. JimL

    Update

    My diplopia isn't consistently the same. Sometimes my eyesight is almost fine, other times it's holy S and it can be in the same day, or same hour.
  14. I've had that before, with this stuff. thyroid problems can cause it as can sinusitis and nasal polyps.
  15. JimL

    Update

    The first ophthalmologist gave me a prescription for prism glasses. I didn't get them because I am indignant about finding the root cause. They won't and it bothers mme. How the heck can all my symptoms be individual problems and then they try to treat each symptom and it's not working and they never scratch their heads and say hmmm...Maybe this need s a second or third look. Both eye doctors are internists, meaning they started in Internal Medicine. The one at Mayo specializes in neurological problems with eyes. If I have 4th cranial nerve palsy, you'd think she'd want to find out why. It's like each doctor is stuck in their own little world and don't consider what's outside of it and my GP isn't very helpful anymore and I am on #2 in less than a year. I am, starting to wonder if the only person that could figure this out is a medical examiner.
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