Autoimmune disorder causing my POTS?
Posted , 4 users are following.
I'm going to warn you in advance that this is a long story and I suck at being brief, but I've been experiencing a number of very problematic symptoms for over a year and a half now that I STILL am trying to explain and figure out how to finally feel better. It's a long list of symptoms, many of them constant or very frequent, that includes dizziness/lightheadedness/faintness, mild balance problems, difficulty concentrating or feeling "spaced out," and fatigue/lethargy that can sometimes be very difficult to deal with. Some less frequent symptoms include a feeling of muscle weakness (percieved or actual is uncertain), a mild, usually brief feeling of numbness or tingling in my arms and legs especially, mild headaches, often accompanied by a subtle, difficult to notice ringing in my ears, and a number of other things I haven't yet mentioned.
Before I continue, it's worth mentioning that I previously started a few threads about this in the process of trying to figure out the cause(s) of my symptoms, so I may as well link to them if anyone wants to look at them.
https://patient.info/forums/discuss/mysterious-dizziness-and-other-symptoms-567591
https://patient.info/forums/discuss/unusual-chronic-migraines--570711
https://patient.info/forums/discuss/some-kind-of-autonomic-problem--583855
Although I'm still trying to find a cardiologist who isn't an a*****e and waiting for the medical system to take its sweet time before I can get officially tested and diagnosed with it, I'm 90+% sure I have a form of dysautonomia called POTS (postural orthostatic tachycardia syndrome) and have been pretty sure about it since March or April of this year. POTS fits many of the frequent symptoms I haven't mentioned yet VERY well, such as getting "winded" and noticing an elevated heart rate much more easily than I should, sweating excessively, occasional temperature regulation issues, and so on, but that's not the only reason I'm so confident I have it. I did a home test with my mom's pulse occimeter sometimes called a "poor man's tilt table test," (I'd link to the YouTube video where I learned about it, but I don't think that's allowed here) and my heart rate gradually went from under 90 bpm lying down to over 130 bpm after 10 minutes of standing next to my bed, a result that would fulfill the diagnostic criteria for POTS in two ways if it were replicated in an official tilt table test. Furthermore, after wearing a holter monitor for a day, I've been officially diagnosed with tachycardia if not POTS just yet.
However, that's all just contextual information. This thread isn't about POTS and what I think I do know. It's about what I still don't know: what could be causing my POTS, and how do I explain the symptoms that POTS doesn't seem to adequately explain on its own? POTS is a syndrome, not a disease, so it has to have something else causing it. Many of the possible causes happen to be autoimmune disorders of some kind, but I'm a lot less clear about what is or isn't likely as a possible cause for my POTS.
Many of them have been uncommon occurrances and/or not particularly noteworthy, but I have had at least a few symptoms that POTS doesn't seem to explain well. Starting from very early on, I've occasionally had a flushing or hot feeling in my face, a vague hoarseness, dryness, or burning sensation in my throat (sometimes with an isolated cough or two, but never a series of them), mild "sniffles" or running of my nose, or watery eyes. These have been infrequent and felt mostly like minor annoyances. Even more rarely than that, I've had one or two instances of feeling sensitive to light or noise. Also, a month or two ago I seem to have had some alopecia; I just shed hair and developed an unusual, oval-shaped bald spot on the right side of my head that looked nothing like male pattern baldness (I'm only 27 and have excellent genes on my dad's side of the family regarding hair loss). And finally, I only recently noticed that I seem to be getting red marks on my skin that don't go away, particularly on my chest, legs, and maybe my butt. When I showed the ones on my chest to my mom, she seemed to think they were hives. On a related note, I do recall having one or two isolated instances of feeling inexplicably itchy in the past.
At the end of the day, I'm not sure what to conclude about what this all might mean regarding the cause of my POTS. I have relatives on both sides of the family with Multiple Sclerosis, but it doesn't seem likely it's that. I've read about a few autoimmune conditions, such as Sjogren's, lupus, or scleroderma, that seem like they might fit at least some of my symptoms that POTS can't explain, but it's hard to say whether I fit the profile of symptoms overall. Although POTS itself is also a good deal more common in women, I also seem like about the LEAST likely demographic group to have some of these conditions as a 27-year-old white male. This is especially true of Sjogren's; apparently about 90% of people with it are women, and it's also more common among older people of color. With statistics like that, I'd be lucky not to be laughed out of the doctor's office for seriously considering it as a possibility.
Another possibility that goes along with POTS is Mast Cell Activation Syndrome, which I believe is considered an autoimmune condition if I'm not mistaken. After all, it is true that a number of the symptoms I mentioned seem to resemble those of an allergic reaction and/or are listed as possible symptoms of MCAS. However, I actually did consider allergies as a possible contributor early on before I knew POTS even existed, and a few things don't fit. For one, I was taking antihistimines for a while, and they didn't seem to have any appreciable benefit for me. Secondly, I did get allergy tested, and none of the allergies it revealed were severe like I would expect if that were the main culprit. Finally, although my symptoms fluctuate a lot over time and seem like they might have some loose connection to the weather, they have NOT seemed to vary on a longer-term, seasonal basis. That suggests that seasonal, outdoor allergies probably don't play a major role, at the very least.
Admittedly, I'm REALLY hoping it's not MCAS because that sounds like even more of an ordeal to go through in the medical system than POTS is. It seems like, compared to POTS, it's just as poorly understood, just as likely to get doctors dismissing you as a hypochondriac, and MUCH harder to test for and diagnose. More importantly, I might be unable to do much about it for financial reasons. I KNOW there are plenty of potential allergy issues with this house, but I don't have the financial resources right now to fix them or move somewhere without them.
Anyway, what do you all think? Are there any particular conditions that you think are likely to be causing my POTS? Do you have any advice on what to do about the situation?
0 likes, 6 replies
steve36083 SLJoosten
Posted
Sorry to hear about all your problems. I'm a polymyositis sufferer. Have you been sent to see a rheumatologist. I think you should have been. It could be an immune system disorder.
SLJoosten steve36083
Posted
Would it be more appropriate to see a rheumatologist versus an immunologist or would either be suitable?
I was going to ask a cardiologist I saw about the idea, except that he was extremely rude and dismissive, I won't be seeing him again, and my mom suggested it wasn't a good time to bring it up. This cardiologist seemed bound and determined to fight tooth and nail against the idea that I could have POTS for no good reason, so I couldn't exactly ask for suggestions regarding what could be causing my POTS when he was bound and determined to fight me about it being POTS in the first place even though I was and still am quite certain that it probably is.
However, I will be seeing a different cardiologist toward the end of the month, and I'm not sure if I even need to get another doctor's referral or recommendation in order to schedule with a rheumatologist, anyway, so it may be easier to just schedule it on my own without asking for another doctor's blessing first.
ayde2016 SLJoosten
Posted
Hello SLJoosten..im a 40 year old Latino lady...i was diagnosed with DERMATOMYOSITIS and SJOGRENS SYNDROME, I had some of your symptoms way before I was diagnosed...Mr Steve36083 it's right you should go see a rheumatologist as soon as possible..and check your health.
SLJoosten ayde2016
Posted
Actually, another thing that I didn't mention that might suggest something rheumatological even if it's not Sjogren's is that my gums have been sore and bloody on a consistent basis when I brush them for months, sometimes excruciatingly so. Even now that I've been brushing them regularly again and rinsing with a mouthwash afterwards, they're always sore and bloody; it's just a matter of how sore and bloody on any given day.
To be fair, this is complicated by the fact that I wasn't brushing as often as I should have for a while until the past few months. It's also been too long since I've been to a dentist due to it falling off the radar in the process of changing insurance a couple times, although I'm scheduled to see one again in mid August.
Still, I know that Sjogren's affects the salivary glands and mucous membranes more than anything, including the gums, and I've actually heard that gum health is a big part of reducing inflammation, which is what all rheumatological disorders involve. I don't know how long it should take for my gums to start improving, but it seems like there hasn't been any consistent reduction in pain there even after months of brushing them daily, and that seems strange to me.
Oddly enough, though, I haven't noticed any particular issues with my teeth themselves. I have really tough enamel, so they don't decay super easily compared to some people.
chubroc SLJoosten
Posted
It could be just idiopathic (unknown) it can happen. That's something no likes to hear but can be so true. Below is a ist that can be a possible cause of POTS. It's lengthy but could be helpful if you haven't already reveiwed them. You did mention one of them in your post though. It's very difficult when you have so much going on and you keep finding doctors who have no compasion. I see 7 doctors on a regular and it truly gets frustrating at times when I have something new going on in addition to what is the norm for me. I'm still researching my dry mouth which for about 3+ years now I'm told to live with it. Nothing is wrong with my salava glands so I'm thinking that is what's confussing them. We just have to keep on moving forward until we find an answer that can help but more than likely an answer that can cure. Stay blessed.
Amyloidosis;1
-Autoimmune Diseases such as Autoimmune Autonomic Ganglionopathy, Sjogren's Syndrome, Lupus, Sarcoidosis, Antiphospholipid Syndrome;1,3, 22
-Chiari Malformation19
-Deconditioning;4
-Delta Storage Pool Deficiency13
-Diabetes and pre-diabetes
-Ehlers Danlos Syndrome - a collagen protein disorder than can lead to joint hypermobility and "stretchy" veins;3,12
-Genetic Disorders/Abnormalities;3
-Infections such as Mononucleosis, Epstein Barr Virus, Lyme Disease, extra-pulmonary Mycoplasma pneumonia and Hepatitis C;1,2,3,4,10,11
-Multiple Sclerosis;14
-Mitochondrial Diseases;15
-Mast Cell Activation Disorders;3
-Paraneoplastic Syndrome - rare small tumors of the lung, ovary, breast and pancreas that produce antibodies;1
-Toxicity from alcoholism, chemotherapy and heavy metal poisoning.1
-Traumas, pregnancy or surgery;1,2,3
-Vaccinations;18
-Vitamin Deficiencies/Anemia;16,17
SLJoosten chubroc
Posted
Admittedly, I've looked into some of those and not others, but some of them seem more or less likely.
If I remember correctly what a Chiari Malformation is, I doubt it's that because I've had an MRI and x-rays of my skull and cervical spine and neither of them showed anything like that.
Deconditioning isn't impossible since I've never been especially athletic or fit, but it seems unlikely timing-wise since I was actually in better shape than usual when my POTS began due to my work keeping me on my feet a lot.
I've had a number of blood tests that revealed little of note other than low Vitamin D, which I've since gotten back up, so that makes vitamin deficiencies, anemia, or diabetes seem less likely.
Ehlers-Danlos is something I've considered as a possibility considering I've always been extremely flexible, but I question whether I'm really THAT flexible, and my skin doesn't seem to be hyperelastic or conspicuously fragile as far as I can tell. It doesn't seem like the most likely possibility, but it might be feasible.
MS does run in both sides of my family, as my maternal grandmother died of it before I was born, and I also have a cousin on my dad's side with it, but it seems quite iffy as a cause in my case. I recall it having a loose resemblance to some of my symptoms, but there's just a lot that doesn't seem to fit.
I'm not sure what heavy metal poisoning refers to, but I think it's probably unlikely, and alcoholism and chemotherapy are impossible since I don't drink (I'm basically a unicorn among Wisconsinites in that respect) and haven't had chemotherapy. I also don't recall any major surgeries, especially not recently, and am male, so it's obviously not pregnancy. And about the closest thing to "trauma" I had near the time my POTS started was tendonitis in my right wrist near my thumb, which has since gone away.
In any case, I may want to look into some of those that aren't ringing a bell off the top of my head, but even idiopathic still doesn't mean, "You only have POTS, so just give up looking for a cause." It just means that the cause is unknown, but there still has to be one since nobody has just POTS.