JimL

Some PNS can be successfully treated, like thymomas and some other tumors. Usually when the underlying cause goes away, so do the symptoms. DINET's website lists them as causes.

I look at the whole picture, not just what's typical. Big picture. Not everyone fits into what's most prevalent.

According to the DINET website, there are a lot of underlying causes. I think some of your answer lies with who gets POTS mostly and the causes for them, but PNS/Carcinoid, Parkinsons, MS, Amyloidosis, IBD, Crohns, Celiac, etc are all identifiable and to some extent treatable, although some have no positive outcome. I would bet for a lot of males, especially those over 50, the reasons for POTS maybe different and therefore the treatment different.

At least you got your PCP to run tests. I asked for a full thyroid panel and all they did was TSH and free t4 PNS and carcinoid are worrisome. I wonder about that too. MCAS? DK. If I had a couple thousand to spare, I'd just get all the blood tests myself to rule out or in something in the list of underlying causes.

Makes more sense now.

Did you have Guillain Barre?

Have you have brain and spine imaging and any neurological studies? Spinal tap? That's not good.

They are treating the symptoms and not the cause because that's how they are trained and either they don't know what causes it and they don't want to try to find out or they can't because they don't have the tools yet. Unless someone loses consciousness, they won't have a sense and urgency and depending on where you are, even then.

Could be the difference. I never smoked, at least habitually. Maybe a cigar once a year or less on average and not in 16 years now.

Just try to get up and walk around a bit every hour or two that you're awake. Aspirin is hard on the stomach, but for blood thinning, 1 a day is fine.

You have a lot going on. Do you smoke or have you? The vascular doc made a big deal out of that. I have what they call post phlebitic leg syndrome. Swelling from the incompetency of the internal veins The three clots I got lodged in the valves of the deep saphenous vein. This causes a slow down in the return to the heart. So if I have POTS, this can't help.

I had mono real bad and then I got a strep throat so bad they hospitalized me. A week after I got out of the hospital I was back on my feet again and one day I was changing to go out with my girlfriend who is now my wife and my calf was huge. I knew exactly what it was. I had crappy insurance that required me to go to their clinic, which was in another town 15 miles away and the Indian doctor said in his accent, you have a blood clot. You must go to the hospital right away. No shite Sherlock. I was in the hospital 5 days from the strep and a week for the blood clot. Some people never get that warning and it kills them because the clots travel to the lungs. That was in 1993.

`I wonder if you need a custom stocking. Your leg could be non-standard `in dimension. Mine was and I couldn't use an off the shelf for awhile. Part of it is my height. They have tall sizes now. If I get any pain it's in my feet is the stocking is too tight in the foot. All I can say is that when the stocking is fresh and fits right, I can feel a difference in endurance and confidence. It feels better. The other thing is pain tolerance. Mine might be higher. I had laminectomy and fusion L4-5 with hardware last fall and I only had oxy 2x when I got home and went on Tylenol after that for 3 weeks. Funny thing is that the GI issues I've been having bother me more than anything else pain wise. I'm just miserable most of the time.

I had a ultrasound of my legs yesterday. The only comment she made was that the clots were extensive, yet I guess the veins adapted. I've always used 30-40 stocking from the beginning though. If fact, my leg feels better with them on, the knee highs. The thigh highs don't have the same compression. All that said, the tighter stockings have had negative effects too. Losing weight helped with that and I prefer open toe. The thigh highs aren't. I've been doing it for 25+ years, so it's second nature.

Did you question them on that? I know that I pay for disability, one before taxes and one after tax. The short term is after, so it's tax free when collecting, but only good for 6 months I think. The long term is through my state pension, which is taken out before tax. For short term, they just need a form from a doctor. Long term I have to see their doctor too.

Spinach is a good source and maybe almonds? There are also magnesium citrate capsules, but they will loses things up. They will also make one sleepy. Best taken before bed.

No vacation days, no travel budget and I don't know how I'd do on a trip nowadays.

Could happen if your diet is off and/or you're urinating a lot.

There are 30-40 thigh high and full on hose too. You may need custom if the fit isn't standard. I had that issue for awhile.

ok. Thanks for the tips. Before this, I was doing Keto. I have a hard time with Keto now, even though I did it for 16 months. I used to eat a lot of fresh greens and use vinegar and tomatoes. No fruit though. I have been eating 3-4 meals a day for about 2400 calories, which for me is maintenance. My weight has stabilized. If I don't eat that many calories, I start to drop weight. I've tried to add more salt, but I've had mixed results. In some ways it helps, but I get other issues. Normally my sodium intake before this would average about 3500, now I am at 4700. I've gone as high as 8000, and that wasn't good. Seems like my standing HR gets a little better, but I retain some water and I still get some dizziness and still GI issues. I also feel a little funky in some ways, different than pots. I think the extra sodium is hard on the kidneys. I notice I've been urinating more too.

Have you gone to a vascular doctor for the leg? I had 3 clots in my right leg since 1993. I get swelling. Just had a follow up with a vascular doc. First one in 20 years. Clots are still there. I'd been wearing knee high compression stockings since the beginning, 30-40mm pressure. Now with POTS, I wear thigh high 20-30 on both legs. Losing weight brought the swelling down a bit. Lost 3" in circumference of my calf losing 170lbs.

And that's where I am at. Next step, is the why?

A small percentage of people make things bad. I hate aholes that make life miserable/worse for others.

If it's like a charley horse, I wonder if it's a magnesium/potassium problem.

Sounds neurological. Have you had neck issues at all?