JimL

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.

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.

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.

Sounds like it could be a cervical issue with a nerve.

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.

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.

I've had that before, with this stuff. thyroid problems can cause it as can sinusitis and nasal polyps.

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.

I am just doing it until I don't have to anymore. I've learned to adapt and push through, but also take it easier at times. I don't have a lot of choices. Just hanging on in order to figure this out.

the odd thing is, before a month ago, I had a hard time maintaining weight, now I've gained 14lbs in a month and don't know why. Told my doctor and he said, lets see what your blood sugar is. It was in the normal range. I have no idea what's going on with my body anymore and doctors don't seem to want to figure it out.

I've been to an Ophthalmologist. Two in fact. The first one confirmed I had diplopia. She did one test for myasthenia gravis, which was negative, as well as a cup and sed rate, both normal. Thing is with the aCH test is that it's only 50-70% accurate. There are four tests for MG. Of course I am just an ignorant patient, what do I know. Further, she sent me to the Mayo Clinic to a neuro-ophthalmologist. The doctor there just repeated the eye tests and said yes, you have diplopia due to a 4th cranial nerve palsy and there seems to be evidence of thyroid disease in the eyes, whatever that means. No curiosity as to why, no further tests of discussion. When I bring up possibilities for it, she looks at me like I have 4 foreheads. Data on Star Trek has a better bed side manner. If she was on fire, I wouldn't piss on her to put it out. She sends me back to my regular eye doctor saying just get prism glasses. Avoid Dr Acierno at Mayo, she's horrible and I found out later I wasn't an isolated incidence. I never had eye problems and only in the last 7 years have I gotten readers. During this whole s*** show, I've never seen such indifference and intransigence from doctors. It's like they pass notes, this one is a nut, there's nothing wrong with them. I am really starting to loath doctors.

Have you had ultrasound diagnostics of the arteries and/or veins in your legs and abdomen?

It's been almost 10 weeks since my cervical fusion and in some ways my symptoms have been slightly better. Could be I've adapted too, pushing through at times. I saw Dr Todd Levine a couple weeks ago. I got his name from the directory here. He's very direct and succinct. Basically, he wants to differentiate between POTS and dysautonomia. He says they are different in that POTS can have over a dozen causes and each one could have a different treatment regiment, while dysautonomia is more specific. So it's more tests coming up. The thing is, it was over 2 months wait to see him and the tests wo;; be up to 2 months in wait too after that. Just getting frustrated in general. In the past few weeks, I've actually started to gain some weight, whereas normally I had a hard time keeping it on. I've also felt worse in the last week and a half. DK if it's the heat ramping up here or something I am eating or whatever. I have been exercising a bit more, mentally wanting to get active and I've done ok in hiking/walking, but I am done later on. I have an appointment with my GI guy today. I had a EGD and Colonoscopy in early May. 2 polyps, a hemmoroid and chronic atrophic gastritis, no H Pylori this time. Last summer I had H Pylori with gastritis. If I could fix my GI issues and get rid of the diplopia, I'd be a lot better off. Just haven't found a doctor that sees it all could be related. Levine said it could be from a result of the massive weight loss I had or my neck issues, bu the latter doesn't explain the diplopia. I still think I might have some autoimmue non-sense or PNS or something lik that, but I am open to logic based discovery if a doctor is willing to go that route. Thing is, very little I eat does not affect me aversely. I just can't eat oatmeal all the time. I am just tired of feeling crummy all the time and doctors are like, your tests come back nornal, you should feel fine BS. By comparison though, a lot of you, most of you, have it much worse than I do and there are times I feel bad that no one can figure this out for a lot of you. With so many people having these issues, you'd think that there would be more research. No one one should have to suffer like that.

I had mild esophogeal dysmobility before the pots symptoms and have cervical fusion made it worse. It's been almsot 10 weeks since surgery and it's gotten better, but it still isn't right.

Mine started at 56...I should get a time machine.

the DINET website has a video on this.

motorcyclists use cooling vests, but they work best in drier weather as they use evaporative cooling. I have done something like that by wetting my shirt with water and wearing my motorcycle jacket over that with the ends of the sleeves opened so as to let air up the sleeves. it works well when in motoin at highway speeds. I actually can get a chill in 110+ temps. that said, if you live in a humid environment, evaporative cooling doesn't work so well. There's a device called a Veskimo that cools the core. It's basically a vest that has water running through tubes in it and the water is cooled by ice water in an insulated camelback or separate cooler.

Have you had any vascular studies done?

Enter the dragon, game of death. I also like Above the Law, Hard to Kill and Out for Justice.

peonies.

I'd like to. Retire. I need 5 more years to get a pension where I work. Not sure I'll make it.

Actually you fit the demo pretty well. Most people with POTS are young and female.

I don't think so. One place used them and they were off from my own omron all the time. The best is an old school mercury column sphygmomanometer for BP. There at digital O2/HR monitors that are good for that. Omron makes halfway decent cuff machines.

I have been thinking the same, but I am the only one. The first PCP was like, you've lost weight and your panels come back fine, get over it and the second PCP is like, they're all unrelated. I don't think they are unrelated. I never have and I am the one that is looked at as nuts.

Went on the GI docs portal today and it said I have Chronic atrophic gastritis without bleeding. That doesn't sound good.