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JimL

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Posts posted by JimL

  1. 4 hours ago, Pistol said:

    @dizzytizzy @KiminOrlando I have had joint pain since onset of POTS 12 years ago. Blood testing always only showed an elevated ESR. My joints get red, swollen, hot and very painful, that is ALL joints. I saw a rheumatologist twice, he ordered tons of outlandish sounding labs and even xrays, but everything always checked out normal and he recommended steroids, which i cannot take due to HPOTS When I told him I cannot take that and asked for Plaquenil instead he said that is only for people with RA. Eventually my autonomic specialist put me on Plaquenil, saying it might help my POTS as well. I ahve been on it for 3 months and it seems to have cut back on my joint pains, although I am having some sort of flare right now. 

    I do not know why the rheumatologist community is so bent on lab results. Obviously if a patient has visibly inflamed joints there is something going on. But apparently they are not yet familiar with auto-inflammation. Which surprises me b/c it really is not a new concept. 

    That's the only thing that comes up with me, somewhat elevated ESR and it's discounted. 

  2. Yeah, I kind of suspect that POTS is probably AI reaction in a lot of folks. I had a poorly treated H Pylori infection. I even sent a link to a paper on one of the government websites about it to my doc. Ignored. I get bouts of dry skin, losing hair and constipation with just feeling off and lousy with worsening esotropia and my standing HR can get a little high, but not like it was. I also get fullness feeling in my left ear.  I can see the esotropia in picts now. I've lost faith in doctors and I will leave it at that. Unless you get one that's curious and has an open mind, it's going to be mixed results at best. I think the problem where I live is that we have a lot of retirees and they are just used to processing patients like an assembly line and go home. I just hate to go through the process again of trying to find a good doc and then wonder if I will be labelled a nut again. 

  3. I've had two Pfizer shots, no adverse reactions. Sore shoulder, tired the first time. Fell asleep during the day I had the first one, which isn't typical for me. Felt off a step energy wise after the second. They give out the Moderna where I work and co-workers have an reactions to that. Chills, shakes and fever, but it seems to affect younger folks more than older ones. Funny thing is a couple weeks plus after the second, I woke up with a slight temp, which is unusual for me and the feeling I was getting a cold. By the evening I was ok. I had a COVID test done, negative. We get pulled for tests randomly at work and I've been negative all along. I give blood and I am negative for AB, so that's good. I don't do well with the flu, which preceded some of my problems, so I don't need this. 

  4. Bananas aren't low carb though, at all. Those are tough diet restrictions. I hope Sarah finds something she can live with day in and day out. Avocados might be a better choice. IDK. I had a hard enough time just with Keto. Without meat/fish, I couldn't do it. 

  5. 2 hours ago, cmep37 said:

    I'll have a look out for those thanks Pistol - my GP gave me these high-calorie protein drinks which are utterly vile so any alternative to those would be good.  I'm not great with thick drinks (I'm the only person I know who eats Hot chocolate with a spoon like soup otherwise I choke on it!) and these taste so synthetic and sweet that I just couldn't get them down.

    There are low carb protein powders. Back in the day I used to use Optimum Nutrition Gold. Figure on .6g protein intake per lb of lean body mass as a minimum for someone not so active. If you have a fast metabolism, you'll have to increase calories a bit. The thing is, protein and carbs have the same calorie value. Fat is over 2x as much. Maybe increase good fats a bit. For me, carbs are the enemy, alcohol doesn't help either. 

  6. IMO, loosing weight is more of a diet than exercise thing, especially if you're older than 45-50. I lost 170lbs on keto over 16 months, went off it eventually and gained some back during the pandemic. Have to lose about 50. Went back on a few weeks ago. It works for me as carbs have never been good for unless I was doing a lot of working out. When I was young, I could do 6 days a week of weight training around an hour with 35 sets, which is a brisk pace and I wasn't lifting light and I could eat 3k calories a day and lose weight. Due do spine/neck issues, I just hike/walk now and my target caloric intake is around 2k calories a day. Generally speaking, calories in and out, but some may find certain diets work better for them than others. I am not a keto preacher, it worked for me, may not for you. You just need to figure out what you metabolic calories are and calories burned with activity and eat a little less calories. I would say as a general statement, skip simple carbs, beer and sugared pop for sure if you can. Try to eat real food instead of packaged/processed stuff. The other exercise I started doing after Christmas is the heavy bag. One of my daughters wanted it for Christmas. I use it a couple times a week. It's one of the toughest workouts I've done considering I can only do 2-3 rounds at a fairly high intensity. That's less than 10 minutes and I am done. I used to do Aikido, but can't anymore with the back issues. Boxing is a lot more exhausting.  BTW, I got my covid shot yesterday. Arm hurts a lot worse today. 

  7. I work at a university and we developed our own test and I can get tested as often as I like. Family too. I've been pulled three times for mandatory testing, once because I was around someone that test positive and I got tested 2x on my own, so far negative there and I've given blood 3x this year and I've tested negative for antibodies. I tested voluntarily once because a student worker was sick with a stomach thing and I got it. It reminded me of when I got H Pylori that started this shite show. That flared me a bit and I've not felt myself since. No POTS per se, but joint pain, malaise and my intermittent diplopia got a little worse. 

  8. 32 minutes ago, Derek1987 said:

     Because of covid and the strain on the hospital, i waited in the lobby 10 hours or so. So i was in there like 13 or 14 hours. Idk how i did it. But they took blood and did an ultrasound and the doc said theres no clot and to get with my pcp. 

    Of course i kept getting judged when i told them my lack of mobility situation. And of course nobody knew what pots or dysautonomia was. The lady doing the ultrasound was like so do u choose not do anything? Like yeah i chose to lay down for 2 plus years, struggle financially etc. Anyways next step, the pcp. 

    Where is this? I am starting to wonder about the competence of the medical profession. I am seeing a decline in IT. It's about shift left management which is pushing duties and responsibilities to lower cost tiers. It's happening where I work, so the help desk is having to handle things they aren't competent at and so on. I think the medical profession is in the same boat. PA's and NP's instead of MDs and NA's instead of RNs etc. No one knows *** they are doing. 

  9. 4 hours ago, Pistol said:

    PLEASE go to get it checked - it COULD be a blood clot. I am not aware that Florinef would cause swelling in just one leg. 

    Absolutely. I got 3 DVT in my right leg in 1993 from being bed ridden from mono. Not fun. My right leg is still bigger than my left because the clots lodged in the valves on the deep saphenous vein. I have to wear compression stockings too. Eventually they put a Greenfield filter in me. 

  10. 23 minutes ago, CallieAndToby22 said:

    Thanks for responses.

    I'm 58 and I've seen a decline in medicine. Some of it is incompetency and some indifference. Some doctors want to punch a clock and work it like a caseworker and some, if they can't find out why blame the patient. I went to Hellmann's and after my experience there, if that doc was on fire I wouldn't pee on her to put it out. She was the worst I've had so far, well, maybe second worst. The GP I have at Honor is like Wally from Dilbert. I am done. 

  11. I have joint issues and double vision. The POTS stuff as quieted down mostly though. Reading above, it sounds a lot like myself. Been through 2 primary docs, a cardiologist, electrophysiologist, neurologist, ophthalmologist, neuro-ophthalmologist, GI doc and a GI surgeon. Most either don't know, think I am nuts or some don't care. My daughter sent me an article yesterday about a woman that got COVID and it seems she has POTS symptoms and arthritis. I don't think I was exposed to COVID, it didn't exist then, but I think I got some sort of bug. The only blood test they've done that comes back abnormal is sed rate and it's not that high. Here's the link to that article: https://www.thehour.com/news/article/A-Canadian-woman-has-been-sick-with-covid-19-15787562.php

    Maybe Canadian doctors are better. I've had no luck in AZ. 

  12. Sounds like an autoimmune issue. I got a flu 4-5 years ago bad and after that I had low testosterone and thyroid levels. Preceding the pots I had a poorly treated h pylori infection which also cause some left side 4th cranial nerve palsy that I have intermittent esotropia or double vision now. I had been doing better, but a student worker got some sort of stomach bug and now I am getting some symptoms again. Worse double vision, stomach always upset and fatigue. Doctors either can't explain it and shrug their shoulders or think you're nuts. When I come up with suggestions, it's like I crossed some line. I just live with it the best I can. 

  13. I had mine out when I was 6 or 7. A long time ago. I've had 9 or 10 surgeries...The only negative effect I had was from ketamine. They gave that to me when I had lower spine fusion in 2018. Not good coming out of that, but other than that, propofol knocks you out quickly. I like to know when it's going in though. You'll feel a buzz for a few seconds and boom, out and the next thing you know you wake up. I had my tonsils out as I had a lot of strep throat infections as a kid. 

  14. I think that at times, doctors are afraid to say they don't know. They might say idiopathic or even hypochondriac at times when they can't explain things or find anything wrong. I've more than a couple long format news shows where people indeed had a problem, they just didn't get to see the right doctor who had the knowledge, experience and desire to figure it out. 

  15. IDK. I had a complaint about a similar experience in Scottsdale that was redacted because I mentioned the doctor's name. I didn't have a good experience. The doctor was a neurologist-ophthalmologist and she was terrible. just went through the motions and basically said, yeah, you have 4th cranial nerve palsy and it looks like thyroid problems in the eye, but we don't know why, but I am sending you back to your regular eye doctor for prism lenses. No interest in why at all. Understand other than age related far sightedness, I never had eye problems in my life. I'd never go back there again for anything. They couldn't pay me to. 

  16. I have always had pinched nerve issues with my brachial plexus and used to go to the Chiro when I had problems. In late 2010 I had been training for the Iowa State Games for Strong Man. One day I was doing incline presses and the right arm pushed the weight up, the left arm did nothing. I was like, ***? I dumped the weight, went to a Chiro and when he adjusted my neck, I felt a shock down my left arm. I took a couple months off from the weights, but it got worse. It felt like when you sleep on your arm all the time. Went to my doc and by April of 2011, I was told I need fusion. I put it off until  January of 2012. I never had steroid shots or PT. It's been that bad. When I had neuropathy in my feet and foot drop, they did a MRI of my lumbar and my spinal chord disappeared at the L4-5 level from stenosis. No steroids, straight to surgery. I had to wait 2 weeks for insurance approval. IDK if it was from being heavy, lifting heavy, bad genetics and or all of the above, but its not been fun. 

  17. I have stenosis all up and down my spine. In 2012, I had C4-6 fused. In Oct 2018, L4-5 and March of 2019, C2-4. A lot of my pots symptoms went away 4-6 weeks after the latest cervical fusion. I think spinal instability near or at the base of the skull can cause issues. Then there something called chiari malformation too that can cause pots like symptoms as can CSF leaks, which can happen with bone spurs. Funny thing, the pots didn't happen until 6 weeks after my L4-5 surgery and I had a CSF leak during it that they had to fix. I got a head ache the next day from it that I would have killed myself to stop it. They tried to sit me up and it was like someone put my brain in a vise. They put me head low turned off the lights and gave me caffeine pills. It went away, but it was no fun at all. 

  18. 1 hour ago, Chuske said:

    I often wonder if any neck postural issues can have some impact on POTS especially after seeing a video of a doctor who treats mild CCI with realignment and said even severe cases that surgery will ultimately fail in long term if patient doesn't correct posture.

    Sure, but at 58 and my fusions, IDK. It is what it is. 

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