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FileTrekker

Bit worried? Wikipedia says Dysautonomia is fatal?

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I am a bit worried as I have suspected POTS but its not confirmed as POTS (how can it be?) and Wikipedia says;

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"The prognosis of dysautonomia depends on several factors; individuals with chronic, progressive, generalized dysautonomia in the setting of central nervous system degeneration such as Parkinson's disease or multiple system atrophy have a generally poorer long-term prognosis. Consequently, dysautonomia could be fatal due to pneumonia, acute respiratory failure, or sudden cardiopulmonary arrest.[4]

Autonomic dysfunction symptoms such as orthostatic hypotension, gastroparesis, and gustatory sweating are more frequently identified in mortalities.[28]"

This has set my anxiety off somewhat..... I thought POTS wasn't fatal??? I have orthostatic intolerence etc. so this is sort of implying I am at risk of these things. My hands often get very cold, epsecially my right hand. Is this what leads to pneumonia? I also find breathing can be harder at times.

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21 minutes ago, FileTrekker said:

I am a bit worried as I have suspected POTS but its not confirmed as POTS (how can it be?) and Wikipedia says;

This has set my anxiety off somewhat..... I thought POTS wasn't fatal??? I have orthostatic intolerence etc. so this is sort of implying I am at risk of these things. My hands often get very cold, epsecially my right hand. Is this what leads to pneumonia? I also find breathing can be harder at times.

It depends on the underlying cause of POTS. If someone has PNS or carcinoid syndrome, that would be bad. So would amyloidosis. Others, like MS, sjogrens, MG are more treatable. CSF leaks can mimick POTS symptoms. Then again, POTS isn't a specific disease, but a syndrome that can have at least a dozen different underlying causes. This isn't a complete list: http://www.dysautonomiainternational.org/page.php?ID=150

I think the key is for the PCP in concert with specialists to nail down the underlying cause. I don't accept idiopathic. It's another way saying I don't know and I've stopped trying to figure it out. I think doctors in general have two major flaws: The inability to admit they are wrong and not dealing well with not knowing.  JMO. 

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The first thing my cardiologist said to me was that it's almost impossible to find the cause and there's no point trying. :(

How can I know I dont have the fatal kind of POTS?

Also what is PNS or carcinoid syndrome? Never heard of it. Could I have these?

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Well, for one thing, the reference for the last sentence that's scaring you is concerning diabetic autonomic neuropathy (Vinik, Aaron I.; Maser, Raelene E.; Mitchell, Braxton D.; Freeman, Roy (2003-05-01). "Diabetic Autonomic Neuropathy". Diabetes Care. 26 (5): 1553–1579. doi:10.2337/diacare.26.5.1553. ISSN 0149-5992. PMID 12716821). Is that what you have?

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...not sure. All I know is I have suspected POTS. They dont see value in looking any deeper into it than that. I don't think I have diabeties though.

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There are several different types of dysautonomia and POTS is NOT FATAL. The complications of certain dysautonomias such as MSA or Parkinsons CAN lead to death but that is a whole other can of worms than POTS. Rest assured - you do not die from POTS. 

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17 minutes ago, Pistol said:

There are several different types of dysautonomia and POTS is NOT FATAL. The complications of certain dysautonomias such as MSA or Parkinsons CAN lead to death but that is a whole other can of worms than POTS. Rest assured - you do not die from POTS. 

Is MSA something that would be detected by a brain MRI?

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Highly unlikely you have a fatal variety. Do you have more than just POTS? I think MSA is Multiple System Atrophy. POTS is a pain, but you will only be frustrated and swear you will die of exhaustion or boredom. 

Wikipedia is woefully inadequate when it comes to dysautonomia. 

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Thank you for the information.

there isn’t much that sets MSA symptoms apart from pots that I can see there on those pages? I’m worried because I’m male and pots is supposedly not found in males often but MSA is?

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20 hours ago, FileTrekker said:

The first thing my cardiologist said to me was that it's almost impossible to find the cause and there's no point trying. :(

How can I know I dont have the fatal kind of POTS?

Also what is PNS or carcinoid syndrome? Never heard of it. Could I have these?

Paraneoplastic syndrome: https://emedicine.medscape.com/article/1156808-overview Carcinoid: https://www.mayoclinic.org/diseases-conditions/carcinoid-tumors/symptoms-causes/syc-20351039

 

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So it's likely I may have these?

Is there a way to tell / find out if I have these fatal ones?

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1 hour ago, FileTrekker said:

So it's likely I may have these?

Is there a way to tell / find out if I have these fatal ones?

I think they are on the rarer side. Do you smoke? Have you had a chest x-ray? PNS, a lot of the times is from lung cancer. Sometimes from neuroendocrine turmors or thymomas, but they have their own symtoms too and they are rare. IMO, it's a process of elimination or problem isolation. Do you have POTS? Ok, what tests do we do for that. In my case, I had a calcium scoring, Heart CT, echo, nuclear stress test and then tilt table. Echo good, minimal plaque, couldn't finish the stress test because my HR went way to high too fast. Land ho! Lets send jim for a tilt table. 20 minutes in, gave me nitro, within 5 minutes I was out. Orthostatic intolerance. Why? I don't know. The cardiologist handed me off to a EP who didn't do much at all and I am on my own. SO, where to begin? Autoimmune disorders can figure in. There are blood tests for them. The strictly neurological ones require a neurologist and probably imaging and other tests to find out what is. Then there are structural issues, like chiari or CSF leaks. Imaging there. If it's cancer, there are tests that can be done there as the cancers secrete substances that interfere with neuromuscular and neurological function. Then there is diabetes. A good PCP, internist really, that knows your history and is familiar with POTS would have a better idea where to start. Another one is amyloidosis. My mother died from that. If I have that, I might as well dissolve 100 seconols in a glass of water and bottoms up. It's scary, but what can one do? I don't have the funds to order the blood tests to eliminated a lot of it. I wish I did as doctors, for me, have proven futile. 

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I don't smoke and all my chest x-rays have come back normal. I've had blood tests for Addisons and pheochromocytoma and both came back fine. I've got slightly elevated liver enzyme levels but other than that my bloods always come back fine. I've had an echocardiogram and that came back fine. All my ECG's come back fine. I've had 24hr monitoring which showed frequent PVC's but other than that normal sinus rhythm with no couplets or runs or anything like that.

They won't do a CT, nuclear, tilt table etc. as they don't see any value in it, so I've never had any of the other tests you mention. So I've never had any other testing.

Thanks for your information. It seems as you say it's likely that I have little hope for the future as I can't find out what it is and I have no way to know. I can't afford to change doctors.

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