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Everything posted by JimL

  1. Maybe? Neck/skull issues can cause POTS symptoms, like chiari malformation or cervical cranial instability. I have had a lot of spine issues and last year I had C2-4 fused. Already had C4-6 fused as well as L4-5. A month after the C2-4, most of my POTS stuff went away. I still have occasional issues, but not as bad.
  2. Took Zoloft years ago and it made me non-reactive to anything. You could have hit me with a 2x4 and I wouldn't have cared. Lowered my libido a lot too and PE with that. I went off it after a year . Coming off it was interesting for a week or two. I've never heard of it used for low BP and high HR.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. I can’t do this for 10 years. Well, maybe I can, but it’ll be miserable.
  9. https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/symptoms-causes/syc-20376539
  10. 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.
  11. 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.
  12. 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.
  13. My omron has to be 20 years old and it still works. I enter the info manually.
  14. 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.
  15. 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.
  16. Life isn't fair. Never was, probably never will be. Choose well.
  17. 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.
  18. 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.
  19. 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.
  20. 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.
  21. 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.
  22. 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.
  23. 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.
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