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I Have Pots But I Don't Have An Autonomic Issue...


LindaJoy
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The last two talks I've had with two of my doctors reminded me of why I'm trying so hard to research, diagnose and treat myself!!!!

Yesterday, I met with a new doctor. I've seen him twice. He's highly respected in my town as an infectious disease doc, but he also does internal medicine and pediatrics. He's looked over many of my medical records from the past few years. He's trying to help figure out why I have the GI / eating / stiffness / etc. problems that I've been struggling with for so long. He's not done researching yet, as my records from Mayo and CC had just reached his office yesterday and he wants to peruse them, but so far, he's focused on my POTS. The first thing he said to me yesterday, after seeing some of my records, was, "How much do you know about POTS?" I said, "Quite a bit, actually. I belong to a great support group (that's all of you!!! :P ), and they're very helpful and knowledgeable about it." He then went on to say that he knows I have POTS, but he thinks I have some variant of POTS. A VARIANT of POTS? Like what? He didn't say. I'm wondering what variants there are to choose from? He explained that he thinks my neurologist is "barking up the wrong tree" when he's constantly testing my skeletol muscles. (He said he's noticed that a lot of my testing has been redundant. I agreed.) He said the problem is with my smooth muscles, not my skeletal, and my docs are focusing too much on the skeletal muscles. He went on to talk about what he thinks the problem may be, something about synapses, I think, about there not being a connection between the nerve's spark and the muscle it's supposed to be sparking. I've heard of this before, but how does it work in connection with POTS and its variants? Oh, and he said this lack of sparking--connecting can be the cause of my muscle stiffness after eating, that he's heard of people with this problem stiffening up due to any type of stimuli (eating, exercise, stress) and the inability of the nerves to connect with the muscles they're supposed to be making contact with. Does this sound familiar to anyone? He was using so many medical terms, it was hard to follow him, and I used to be a medical article writer!

He said my neuro was, again, "barking up the wrong tree" with the exercise EMG he is going to do this Friday. I asked what tests he would suggest for what he feels is wrong with me. He said, "Oh, what's wrong with you is very hard to test for (something about sympathetic versus parasympathetic problems and the differences in testing being harder for para than sympa). Then, he mentioned something about eating and watching the food (not gastric emptying study) go over my intestines through a cat scan or something. No idea.

Now, after all of that, today, my husband was talking with my CC neuro's nurse, and according to my CC neuro, I don't even have an autonomic problem, so I couldn't possibly have a smooth muscle problem. I guess he said it as there's no evidence that I have autonomic failure. Not to sound stupid, but isn't POTS autonomic failure? My husband said, "Well, Mayo said she has autonomic failure, diagnosed after her sweat box test (I failed to sweat in several areas), and isn't POTS an autonomic disorder?" The nurse said, "Well, that's something the doctor will have to speak to you about." I thought anyone with POTS has autonomic failure--not PURE autonomic failure, but autonomic failure, as the autonomic stystem is failing to work right. Am I wrong here? Have I been reading things wrongly?

Anyway, I've about had all I can take!!!! For the past few weeks, my heart rate has been going up and down like a merry-go-round (anywhere between 39 and low 100's). I have been constipated for nearly two weeks now (Milk of Magnesia brought some relief, but not much, more gas and bradycardia than anything); cannot swallow without pain and / or food sticking; gastroparesis making the food sit in my stomach so long I think the pork is building pens and the potatoes are having babies; and an episode today of bp dropping like a rock, going into tach then and shakiness like I'm on drugs! The blood is pooling in my legs so badly within minutes of standing, I look like a grey cat is clinging to both of my thighs. And, now, my neuro says I don't have any evidence of autonomic failure. I feel like I'm on an episode of the Twilight Zone. One doc says I have POTS, only a variant of it, and this doc says I show no evidence of autonomic failure.

Can anyone help bring understanding to this warped brain of mine? :):blink::blink::blink:

Thanks.

Linda

Oh, and anyone in need of two grey cats????

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Linda, I didn't have a typical EMG, but was given what's called E stim for the problem you are describing. The switch in your brain that tells your muscles what to do isn't connecting, for what ever reason, with those muscles.

When I was tested, she did the strength stuff and even though i was weak, the thing that grabbed her was that my arms and legs jerk as I'm trying to hold them. For instance, she tells me not to let her pull my arm down. She can, because i'm very weak, but in my effort not to let her do it, my arms make little tiny jerking motions. It's not a smooth pull down or me just being able to hold me arm in place. She said this was neuro 101. It is very abnormal, however, I have done it as long as I can remember.

She said the E stim would reconnect these "synapses" or whatever. That didn't happen, because I kept paralyzing before the treatment was over. (I thought it was a bogus thing and she was trying to trick me, but not so) What it did show, is that before I paralyze it takes about 20 mghzt or what ever to cause my muscles to contact, HARD. When I am paralyzed, they don't react at all, at 95 mghzt.

So we didn't didn't get that connection fixed, but it did prove that i have a serious "very real" medical problem. This may be what he is talking about. It will be interesting to see what your muscles do with stim. Stay the same, go flaccid, or go rigid. My hands and face and feet will go rigid, but mostly I go flaccid. Hope that helps....

This can cause a lot of ans problems.....

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Linda

POTS is a dysautonomia ... but not everyone who is diagnosed with POTS has damage to the autonomic nerves. The fact that you have areas where you dont sweat would indicate that you probably do have some damage to the autonomic nerves.

Autonomic dysfunction may be a better phrase to use rather than "failure "as that can cause confusion with PAF.

The fact that you have been diagnosed with autonomic dysfunction at Mayo should be sufficient...dont let other docs confuse you .

Hope this helps

Margaret

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Linda,

POTS is a form of autonomic dysfunction = dysautonomia.

It means that the autonomic system doesn't work the way it should do. It is best to only use the word failure when talking about PAF (pure autonomic failure) which is a specific problem that most of us on the forum don't have.

So your neuro may be correct saying that you don't have autonomic failure, but that isn't the same thing as them saying your autonomic system works normally.

I hope all this testing leads to some answers and clarifies some of the confusion.

Flop

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Not to contradict, but yes, the words "autonomic failure" appeared right beside the word: Impression, on the page that showed my sweat test results. Now, the neuro said nothing about failure, but it said "autonomic failure" on the page that showed the picture depicting a person, supposedly me, and where I didn't sweat during the test. So, was this not intended for me, then?

Linda

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Hi. I've had this problem - I don't think there is a standard understanding of POTS/dysautonomia. I have gone back and forth with many doctors telling me what I do and don't have. After a while I just gave up trying to get a definitive answer.

If this new doctor is not a POTS specialist, he might not know the right terminology. Since Mayo are experts in this area, I would go by the terminology they used. Did you get a letter from them saying what your diagnosis is? Did they say autonomic failure or POTS? If you have any doubt, give them a call. In the end, I think many people here have trouble getting the correct label for their condition, but the label is not as important as the testing and treatment.

You could give your new doc some articles on POTS or ask him to talk to your other doc or Mayo to make sure they are all on the same page. I know this is easier said than done. Frankly, I got fed up with all the back and forth a long time ago I just decided to take what I wanted to take from each doctor. If you are still trying to figure out what is wrong with you, maybe you want to continue with testing with BOTH this new doctor and your neurologist. Good luck.

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Linda, it is strange that the words "autonomic failure" appear in the impression section. Sometimes they read the studies as "mild cardiovagal failure" or "cardiovagal failure", but usually not "autonomic failure" because "autonomic failure" means not only failure to sweat, but failure in other autonomic functions. What did the consultation report by the neurologist state? I would go with what your neurologist said to you or mentioned in their report, not what the report from the autonomic tests said. You're right that physicians/technicians should use consistent terminology so that this type of confusion is avoided. Good luck!

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I think when something is not well known, many terms are used interchangeably and then incorrectly. My paralysis has been noted as syncope and vice versa. So it wouldn't surprise me to hear that an incorrect term was used. I believe even some of the specialists have a running debate on certain terms at times....I saw that in a couple of articles I read by the doctors anyway, maybe it's resolved..... :blink:

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Thank you, everyone, for your input! Doctorguest, in response to your questions: The page that showed the diagram of a person and where he / she didn't sweat during the sweat box test (I'm assuming that was me), said Impression: Autonomic Failure. But, the report that came from the neurologist that I saw there at Mayo didn't mention autonomic failure at all. She wrote that my tests were consistent with POTS.

I'm like all of you, I really wish they'd use consistent terminology.

Speaking of terminology, a doctor that we all know and respect told me of a doctor in Cleveland who makes up terminology to the point that follow-up docs have no idea what's been diagnosed. The other docs even have a name for these made up terms, but it includes the doc's name, so I won't say it here. I just found it incredible that a doctor actually makes-up diagnostic terms to the point that other doc's don't even know what's been diagnosed. Makes it hard for the patient to know what he / she's got so that he / she can research!

Linda

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I think some of the doctors don't like it when we research.

Of course, if I hadn't done research, I would have never seen this site, would have never thought I might have POTS and would have never been tested for (and diagnosed) with it. I would still just be a psychiatric patient.

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