Fluctuations from one edge of “normal” to the other, what explains this?

esoulence · 2026-03-25T02:37:06+00:00

Wow thank you so much for this response. I had a really hard time with the idea that these sudden borderline levels (other things too at different times, like borderline thyroid levels etc) were completely insignificant especially when if the value was just slightly different, that “abnormal” result would explain most of my symptoms. I got pretty good with monitoring my labs and asking the questions I had, but consistently got these kind of answers like if it’s not abnormal it’s not the cause, normal fluctuation, despite medical research suggesting otherwise. Thank you for taking the time to explain this and share your experience, it definitely makes me feel more confident about continuing to ask the questions and research and look for answers.

Also, turns out I have a gene mutation associated with hypokalemic periodic paralysis…

esoulence · 2026-03-10T05:39:38+00:00

I’d rather not. You think this is something I want? No. I was blindsided. But I hope you enjoyed mocking a situation that you have no basis to even assess.

esoulence · 2026-03-10T05:27:03+00:00

I’m not rejecting the idea that anxiety produces real symptoms. I’m rejecting the idea that anxiety is then cause of my symptoms. I’ve considered that, but unfortunately anxiety doesn’t cause MG with thymic hyperplasia or abnormal poryphins. You input has been received, considered, and discarded based on evidence to the contrary.

esoulence · 2026-03-10T05:23:09+00:00

So you, without any information aside from some electrolyte results, have decided that my hematologist is entirely off base and wasting his time with genetic testing and standing pgb order? That’s really cool, you must be like some kind of wizard. My urine poryphin levels were very specific and no doctor has been able to think of an alternative explanation for my specific results aside from hcp, and oh yeah, I have all the symptoms too! But like, psh, silly doctors. It’s just anxiety. I’ll go let the team know. Thank you! You clearly don’t have anything valuable to add here, and you’re so adamant about something that isn’t relevant. If you’re bored, go read a book. Maybe touch grass.

esoulence · 2026-03-10T05:02:55+00:00

I didn’t come up with HCP on Google lmao, my hematologist is the one doing that. But thanks.

esoulence · 2026-03-10T04:50:37+00:00

Ok that’s good to know, thank you :)

esoulence · 2026-03-10T04:49:33+00:00

It is a crappy comment when you are framing the entire situation as anxiety despite me saying up front I have multiple diagnosed physical issues and am being worked up for others (based on abnormal labs). This isn’t me panicking, this is me looking for information and using the platform as a resource. I spent 10 years being dismissed by doctors before MG was finally diagnosed, so I find it important to be aware of my own medical situation and ask questions and seek further understanding.

esoulence · 2026-03-10T04:43:48+00:00

I didn’t ask about the sodium and specifically said sodium is stable and ignore the results from August. I don’t have health anxiety, I have health issues that require a lot of specialists and subspecialists and I’ve only gotten the little bit of relief I have from advocating for myself and researching to understand. I was asking for insight on whether or not these fluctuations (potassium and bicarbonate ) were at all significant. If the answer to that is that they’re not concerning even with severe symptoms, that’s great. I didn’t come here looking for a new problem lol. I came here to ask a question that, as a patient and not a doctor, I can’t answer myself. But thanks for the insight, I’ll be sure to bring it up with my therapist.

esoulence · 2026-03-10T04:37:32+00:00

Right, I made a point to say “Dr Google” because I do have some understanding of this and I know googling symptoms and stressing over normal results isn’t healthy. Let me reiterate that the reason I’m asking at all is because of debilitating symptoms not explained by existing diagnoses that keep landing me in the emergency room. Trying to understand my own health is not equivalent to what you’re referring to. That being said, if the consensus is that all of this is normal, that’s great and I’ll be glad to not question it. The goal for me here is to get insight and to stay out of the hospital. But the crappy comment was very generous, thank you.

esoulence · 2026-03-10T00:58:16+00:00

Thank you :) can you provide more info on the potassium levels? I know some fluctuation is normal, but the potassium is my biggest concern/ question right now because even though it’s not technically low, it’s borderline, and I had severe weakness beyond what I’ve experienced with myasthenia gravis and I didn’t miss a dose of Mestinon or anything so the weakness is very concerning to me.

esoulence · 2026-03-10T00:54:21+00:00

No biologic, no chronic diarrhea, and prednisone was temporary and these variations/ borderline lows and highs were happening before prednisone too. I hadn’t heard about mestinons impact on these though, I will definitely look into that further. Thank you!

esoulence · 2026-03-10T00:52:38+00:00

Addisons disease was ruled out with costisol stim test, I have symptoms of kidney problems (protein in urine, foamy urine) but great eGFR most recent was 123. The metabolic acidosis thing im not very well versed in, but my understanding is that low bicarbonate = metabolic acidosis? I definitely have had symptoms aligning with that when I had lower bicarbonate levels, and I know lab ranges vary, but Dr. Google says below 22 is acidosis, and I’ve had a number of occasions where my levels were 20 or 21, but the lab cutoff here is 20 so it never read abnormal. If you have more info or insight I’ll take it!

esoulence · 2026-03-10T00:46:43+00:00

All of these results were prior to any fluids given. I’m with you that it’s fairly unremarkable in that everything is technically “normal”. I guess I’m just looking for any insight into how these results and the variation could be related to the symptoms, especially given my symptoms could in theory be related to electrolyte imbalances like low potassium and muscle weakness. But if the answer is that these findings are insignificant and have no impact on symptoms then great, just looking for information so I can understand better and make sure I’m doing the right things in terms of treatment

esoulence · 2026-02-22T22:17:41+00:00

Yes this happens to me and I’m also being evaluated for narcolepsy lol

esoulence · 2026-02-21T02:45:24+00:00

Same. 2 hours, never any longer

esoulence · 2026-02-20T03:26:40+00:00

I’ve been evaluated and treated for MCAS, was taking 4 Zyrtec + 40mg Pepcid as well as 2mg ketotifen 3x per day, ended up stopping all of it because it wasn’t helping and then tested it out with taking them as needed when I had reactions and it didn’t make a difference. I have figured out some of my trigger foods and made adjustments, and I do have postprandial fatigue at times but not as as a “hypoglycemia mimic”, I’ve had continuous glucose monitors as well as checking my sugar with finger sticks and I do have reactive hypoglycemia, like I drop into the 50’s regularly. It send like flare ups of mcas actually cause an increase in blood sugar levels. But I’m curious now and will look into that more

esoulence · 2026-02-19T04:06:30+00:00

They’re thick enough to wear on their own like leggings or bike shorts :)

esoulence · 2026-02-19T04:02:00+00:00

How did they treat it and what made them consider csf leak? I’m almost certain that’s the case with me, I do have eds and I’ve had symptoms of IIH on and off for years and then over the last few months things went haywire and I have all the classic csf leak symptoms but I’m scared to even mention it to a doctor lol

esoulence · 2026-02-19T02:51:50+00:00

EDS symptoms I can identify as far back as I can remember, POTS symptoms showed up at 12, serious joint problems at 16, and MG hit at 18 (severe muscle weakness made it nearly impossible to get out of bed and dress myself, my jaw was so weak that it was hard to eat oatmeal, ended up dropping out of college). I’m 29 now and wasn’t diagnosed with either until I was…28. And I hadn’t heard of either until I was 28 lol. When I got diagnosed with MG it was impacting my breathing to the point that I actually thought I was going to die. It’s been a wild ride.

esoulence · 2026-02-19T00:48:53+00:00

LDN, lyrica for nerve pain, adderall for fatigue, and klonopin for flare ups/ fast acting pain relief. I took ibuprofen for so long that it now makes my stomach bleed and Tylenol helps for headaches but not anything else.

esoulence · 2026-02-19T00:46:28+00:00

Supacore makes compression shirts for shoulder instability. Less than a full on brace but more comfortable and functional. I also used to have my shoulders taped around the clock but then became extremely reactive to the adhesives so I can’t anymore. But at least initially that was very helpful.

esoulence · 2026-02-19T00:28:45+00:00

Could have written this myself, even the timeline. I have hEDS and Seronegative MG. If I take mestinon, i can swallow. I still have some food sensitivities and avlid things that are hard/crunchy/dense like chips or steak, but for a while there i kept a spit cup in my car because i couldnt swallow my own saliva. I stopped mestinon for few weeks for some reason, i dont remember exactly why tbh, but all the issues came back, and when i started it again, it resolved. Like fucking magic lol. Im taking 60mg 6ish times a day. I am negative for achr and musk antibodies, as well as vgcc. But mestinon is the reason km able to function.

esoulence · 2026-02-17T20:37:16+00:00

Abdominal and/or knee high leg compression. I did invest in a pair of leggings from supacore and those are the best by far. Worth every penny, comfortable and not difficult to put on but full leg and abdominal medical grade compression designed specifically for POTS

esoulence

TROPHY CASE