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Can Anyone Link These Together?


Mrs. Burschman
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There seems to be a heck of a lot more expertise on this message board than anywhere else in the world, so if you have any ideas, that would be awesome! :P

I was diagnosed with POTS in 2007. That was a relief. Autonomic nervous system problems seemed to explain a lot.

However, I'm wondering if anyone has any theories as to the relationship of POTS to the other crap I have been diagnosed with:

1. Ulcerative colitis (though I've never had bleeding)

2. Interstitial cystitis (though none of the typical treatments did a darn thing)

3. Polycystic ovarian syndrome (metformin takes care of that)

4. Migraines

Is there any link between these things that anyone can see? Do you think autonomic dysregulation could cause all that? Or is a mast cell disorder seem more likely?

Unfortunately, I don't have an autonomic doc. The one who diagnosed me is in South Dakota. I'm in Washington, D.C. And I don't even know what kind of doctor to ask. Urologist? Gynecologist? Neurologist? Gastroenterologist? Immunology? Geeze.

Any ideas? HELP!

Amy (Mrs. Burschman)

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To some degree. I have ankylosing spondylitis as well as POTS - AS is quite similar to and is related to UC to the point where when i got diagnoised with AS they did a check to see if I had UC.

The two obvious thoughst are firstly that your POTS may have a primary autoinflammatory basis although there isnt much proven evidence out there that demonstrates this.

More importantly, there are cases where chronic inflammation may result in these kinds of vascular abnormalities.

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while my "answer" is by no means a definite/ exact answer, since you asked i'll offer one theory of connection for at least most of what is on your list.

migraines are a well known component/ accompaniment of POTS for many (though not all) individual; in other words i'd hazard to guess that most POTS/ dysautonomia gurus wouldn't even list the two as separate entities on your list. no it's not quite as standard/ common as having issues w/ being upright but it' still high up on the list.

moving on, it is fairly well agreed upon across much of the dysautonomia community (specialists, researchers, etc.) that a subsection of POTS/ dysautonomia patients have an autoimmune connection/ causation to or behind their illness/ diagnosis. for most individuals this is a theory rather than anything that can be proved definitively via any type of testing but even in the past 10+ yrs a lot of progress has been made (as there are in fact some autoimmune types of dysautonomia that ARE currently diagnosable via specific testing); the theory then follows that there are likely other types that will be specifically testable in the future, aka 10yrs ago tests/ diagnoses they have now didn't exist so it's not unreasonable to think that 10yrs into the future some will exist that aren't yet quantified today.

IF your POTS/ dysautonomia (and i do realize it is an if that will likely go unanswered for you for at least a period of time) is of the autoimmune etiology then several of the other items on your list can be more readily connected b/c both ulcerative colitis and interstial cystitis most often fall under the category of autoimmune illness/ disease/ diagnosis. it is generally agreed upon that an individual with one autoimmune diagnosis is more likely to have other autoimmune diagnoses (one or more).

obviously my theory is only that for you specifically, though the info i shared re: autoimmune illnesses - in relation to POTS/ dysautonomia, in relation to UC & IC, & in general - is considered factual as far as anything in the medical world ever can be certain (i.e. i didn't make up the theory/ possible connections; i did "make up" in a sense the possibility that you & your situation/ diagnoses fit into the proposed grid.)

last but not least i am curious re: how you were diagnoses with ulcerative colitis, specifically as you mention never having had any bleeding? i am particularly curious b/c i was actually misdiagnosed w/ UC myself a number of years back, the short version being that i did have colitis that required hospitalization and did require treatment for a period of time that is most often used in patients w/ ulcerative colitis. after that 4-6 months period of time however i have never had a problem aside from visible scarring in a small area of my colon from the past problems/ flare-up; as such, while my diagnosis of UC was not necessarily "wrong" when it was given, in hindsight it was incorrect and instead we know that i instead had an account bout of colitis. not something that would have changed a thing when it was happening but at least one chronic/ long-term illness/ diagnosis i don't have to manage or even stay aware of on an ongoing basis.

hope this helps,

:blink: melissa

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last but not least i am curious re: how you were diagnoses with ulcerative colitis, specifically as you mention never having had any bleeding? i am particularly curious b/c i was actually misdiagnosed w/ UC myself a number of years back, the short version being that i did have colitis that required hospitalization and did require treatment for a period of time that is most often used in patients w/ ulcerative colitis. after that 4-6 months period of time however i have never had a problem aside from visible scarring in a small area of my colon from the past problems/ flare-up; as such, while my diagnosis of UC was not necessarily "wrong" when it was given, in hindsight it was incorrect and instead we know that i instead had an account bout of colitis. not something that would have changed a thing when it was happening but at least one chronic/ long-term illness/ diagnosis i don't have to manage or even stay aware of on an ongoing basis.

Hey Melissa. Thanks for weighing in!

I got diagnosed with both IC and UC the same way -- bladder and colon both showed inflammation. Of course, I PERSONALLY think that the inflammation is probably neurologically mediated -- as in my autonomic nervous system is screwed up, and it shows up as inflammation. Good luck trying to convince any doctors of that one! :blink:

Do you know if any treatments differ if the POTS/other stuff is autoimmune? And what type of doctor would one consult? Immunologist? Rheumatologist?

By the way, I've been gone for a while, and I was thrilled to see that you're still hanging in there! You're an inspiration!

Amy (Mrs. Burschman)

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Hi Amy,

I have both severe migraines and interstitial cystitis, neither of which I had before my diagnosis, also in 2007, of POTS/OI. As Melissa wrote so well, I do believe that they are part of my symptoms from this illness, part of the autoimmune factor.

Good to see you, and hope you get all the answers you're looking for...then you can share with us!

Cheers,

Jana

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Hi Amy,

I have both severe migraines and interstitial cystitis, neither of which I had before my diagnosis, also in 2007, of POTS/OI. As Melissa wrote so well, I do believe that they are part of my symptoms from this illness, part of the autoimmune factor.

Good to see you, and hope you get all the answers you're looking for...then you can share with us!

Cheers,

Jana

Thanks, Jana! What type of doctor do you see for your POTS? I'm currently without a physician (we moved to D.C. four months ago) and I'm not sure who I should be seeing if I think there could be an autoimmune component.

I hope all's well with you, and I'll certainly share if I figure it all out! :blink:

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I see both a cardiologist and a neurologist. I did go to Mayo last March to see a specialist in ANS who was a neuro, also. I know I should also see an endocrinologist (I think they'd be best for the autoimmune stuff, but I may be wrong), but just haven't gotten there yet. I would think you'd need the cardio and neuro, too. If depends on how familiar they are with POTS if you need other specialists. My cardio is very familiar with it, so I'm lucky in that respect. Oops - I forgot the gastro doc. Have you seen a specialist in ANS yet?

Take care,

Jana

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I see both a cardiologist and a neurologist. I did go to Mayo last March to see a specialist in ANS who was a neuro, also. I know I should also see an endocrinologist (I think they'd be best for the autoimmune stuff, but I may be wrong), but just haven't gotten there yet. I would think you'd need the cardio and neuro, too. If depends on how familiar they are with POTS if you need other specialists. My cardio is very familiar with it, so I'm lucky in that respect. Oops - I forgot the gastro doc. Have you seen a specialist in ANS yet?

Take care,

Jana

Just the doc who diagnosed me, back in South Dakota. I hate doctors. :blink:

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The doctors often most knowledgable about autoimmune disorders are rheumatologists. They usually see patients with all sorts of joint problems, arthritis and connective tissue diseases such as Lupus, Ehlers-Danlos Syndrome, Myositis and Vasculitis. Obviously the experts on ulcerative colitis would be a gastroenterologist and a urologist for interstitial cystitis but maybe a rheum might be helpful. Don't expect a rheum to manage your POTS though, usually cardio, neuro or some endos for POTS.

Good luck in your search for a helpful doctor. Have you checked out the physician list on the main DINET website, there maybe someone near you listed there.

Flop

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Thanks, all. I think it would probably be a good idea for me to see an immunologist or rheumatologist. They might think of something I hadn't yet. I probably also need a gastroenterologist. Ugh. I'm expecting whoever it is to have no clue about autonomic issues. :blink:

It's such a pain to see doctors here! It was so easy in South Dakota. I just picked a hospital, and went to specialists at my chosen institution. Here, it seems like nobody is taking new patients. I finally found an internal medicine doc WHO HAD HEARD OF POTS -- bonus! but she's hard to understand. Language barrier. :(

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I have been to three rheumatologists and all when I described POTS to them said that they believed it would one day prove to have an autoinflammatory basis when the story is fully told.

BTW there is evidence that around 10-13% POTS patients have an autoimmune basis (these are generally the peripheral pooler variety)., I have a hyperadrenergic form, but I am quite convinced it also has an autoinflammatory basis - if not directly from the actual damage from an autoinflammatory attack, or indirectly through chronic inflammatory markers mediating inappropriate vasodilation (through calcitonin gene related peptide or substance P) or vasoconstriction (through impaired metabolism of angiotensin II and reduced nitric oxide bioavailability).

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I have been to three rheumatologists and all when I described POTS to them said that they believed it would one day prove to have an autoinflammatory basis when the story is fully told.

BTW there is evidence that around 10-13% POTS patients have an autoimmune basis (these are generally the peripheral pooler variety)., I have a hyperadrenergic form, but I am quite convinced it also has an autoinflammatory basis - if not directly from the actual damage from an autoinflammatory attack, or indirectly through chronic inflammatory markers mediating inappropriate vasodilation (through calcitonin gene related peptide or substance P) or vasoconstriction (through impaired metabolism of angiotensin II and reduced nitric oxide bioavailability).

Have the rheumatologists been helpful? Did they have any new ideas that you hadn't heard before? I really hate going to the doctor, but would if I thought he/she might have something useful to offer.

Thanks!

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It does sound like your symptoms could be linked. I think low blood volume/improper blood flow can cause migraines and stomach problems - and of course dysautonomia.

As for PCOS - it's pretty common for women to have ovarian cysts. Like POTS, it causes all sorts of crazy symptoms. My obgyn told me I have it, but in my case I think all of my symptoms are related to POTS. Not to say that yours are, but there is a lot of overlap between POTS and PCOS symptoms

If you saw one of the really good POTS specialists, they might be able to link it for you.

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