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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. 

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14 hours ago, JimL said:

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.

Hi Jim - I have found that our ability to exercise wakes and wanes like the symptoms. When I have a good spell I can do more and even daily activity but still have to watch how much I do. I have learned that if the type or amount of exercise zaps my energy then I have to do less of it and more of another kind that makes me feel better. Sometimes I might be able to benefit from a short stroll around the yard but other days that will cause me to be useless for the rest of the day. Maybe if a hike is too much for you right now do less of it? It very well might be related to the heat, since you are exercising out doors. While the hike itself may make you feel energized the heat could be too much, which will make you feel drained afterwards. If you have access to a pool - might swimming be a better option for you? It is a very good exercise for all joints and muscles and many dysautonomia sufferers tolerate it well. --- Hope you feel better soon, you have gone through the wringer!!!! 

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Try an orthoptist for your diplopia. They have lots of headache inducing tests and some people respond to the reconditioning they can do. Don't plan on driving straight afterwards as having your vision split really does your head in.

Prismatic glasses can also help and the orthoptist should be able to add this to a current prescription, and if you don't have a prescription you can always have just the prism.

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5 hours ago, GasconAlex said:

Try an orthoptist for your diplopia. They have lots of headache inducing tests and some people respond to the reconditioning they can do. Don't plan on driving straight afterwards as having your vision split really does your head in.

Prismatic glasses can also help and the orthoptist should be able to add this to a current prescription, and if you don't have a prescription you can always have just the prism.

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. 

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On 6/4/2019 at 3:45 AM, Pistol said:

Hi Jim - I have found that our ability to exercise wakes and wanes like the symptoms. When I have a good spell I can do more and even daily activity but still have to watch how much I do. I have learned that if the type or amount of exercise zaps my energy then I have to do less of it and more of another kind that makes me feel better. Sometimes I might be able to benefit from a short stroll around the yard but other days that will cause me to be useless for the rest of the day. Maybe if a hike is too much for you right now do less of it? It very well might be related to the heat, since you are exercising out doors. While the hike itself may make you feel energized the heat could be too much, which will make you feel drained afterwards. If you have access to a pool - might swimming be a better option for you? It is a very good exercise for all joints and muscles and many dysautonomia sufferers tolerate it well. --- Hope you feel better soon, you have gone through the wringer!!!! 

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. 

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2 hours ago, JimL said:

I've been to an Ophthalmologist. Two in fact.

 

She sends me back to my regular eye doctor saying just get prism glasses. 

Prism glasses can help, even if they aren't perfect. The other option is an eye patch.

An orthoptist (OK I didn't know it was a thing before I was sent) is usually someone dealing with squints and the like. They are a bit like physio for the eyes and this can help. However having your vision split by various prisms to 'exercise' the eye muscles is surprisingly tiring and headache inducing. It does help some people. My orthoptist did several tests with different prisms over several sessions before deciding what compromise would work best for me. 

I never wore glasses before and had plain glass (with slight astigmatism adjustment) made with prisms. They help a bit.

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21 minutes ago, GasconAlex said:

Prism glasses can help, even if they aren't perfect. The other option is an eye patch.

An orthoptist (OK I didn't know it was a thing before I was sent) is usually someone dealing with squints and the like. They are a bit like physio for the eyes and this can help. However having your vision split by various prisms to 'exercise' the eye muscles is surprisingly tiring and headache inducing. It does help some people. My orthoptist did several tests with different prisms over several sessions before deciding what compromise would work best for me. 

I never wore glasses before and had plain glass (with slight astigmatism adjustment) made with prisms. They help a bit.

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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15 hours ago, JimL said:

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.

Jim - even prism glasses will not help to find the cause of the diplopia they will help correct it. Therefore they do not hinder you from trying to find the cause - they will just help your symptoms in the mean time. No?

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2 hours ago, Pistol said:

Jim - even prism glasses will not help to find the cause of the diplopia they will help correct it. Therefore they do not hinder you from trying to find the cause - they will just help your symptoms in the mean time. No?

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. 

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I hear you on the reacting to everything you eat. I've had 5 weird heavy heavy fatigue unable to move attacks in 10 days, all food triggered. I am down to oatmeal too, and some white fish and salad. And small amounts or over the edge I go. Been looking for meal replacement drinks but there's so many triggers and gums in them I'm at a loss.  Also unable to eat after 4/5 pm or the next day is a brain fog, light sensitive, in bed heavy fatigue right off. Pushing to see another GI specialist as can't get anyone to take me seriously.

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5 minutes ago, misseb said:

I hear you on the reacting to everything you eat. I've had 5 weird heavy heavy fatigue unable to move attacks in 10 days, all food triggered. I am down to oatmeal too, and some white fish and salad. And small amounts or over the edge I go. Been looking for meal replacement drinks but there's so many triggers and gums in them I'm at a loss.  Also unable to eat after 4/5 pm or the next day is a brain fog, light sensitive, in bed heavy fatigue right off. Pushing to see another GI specialist as can't get anyone to take me seriously.

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. 

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Interesting. Unlike most POTs sufferers I am safer with what I eat earlier in the day than later. It gets more dangerous as the day goes on too. Last time I ate a large evening meal it put me in bed for two days. I have also observed that sugars are a problem, fruit especially,  it's as if I am collecting fructose and sugar as the day goes on making me awful by the afternoon. My SIBO test was negative. Have you looked at SIBO ? Also something is happening in the night. I have read that mast cell activity is increased by the chemicals our bodies admit to aid sleep. I get really bad pains and cramps in my legs and huge adrenaline surges when I sometimes lie down. I have MCAS too. 

I had an MRI scan today on my small bowel for gastroparesis. 

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@JimL and @misseb: have you tried to cut down big meals and do 6 small snacks a day? This has helped me greatly for my dysautonomia related GI issues ( nausea, fatigue, post-prandial hypotension and syncope, hypoglycemia ) and I have even gained weight with it!!! 

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Yep. I am at my best when I am snacking every 2 hours. If I leave it any longer than say 4 hours I hit a wall and that's it for the day as I am totally faint, tired and exhausted. 

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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. 

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Keto makes me so fatigued now. I need some sugars or I'm crosseyed, fatigued and useless. But fructose spaces me out, gives me tremors and fatigues me. It's like walking a tightrope to keep the show on the road as best I can. I think I'm going to start monitoring my blood sugar. When I come out of an attack I'm craving salt and sugar. 

I think we also retain a lot of fluid at times due to the salts, dehydration, and general body confusion. When I'm bad my fingers feel swollen and fluidy - maybe that is something to do with your weight changes. 

 

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