zerohours000

@StayAtHomeMomNot to butt-in but I just had my ANA back it was relatively "low" --- 1/40 --- but what does that even mean? My doctor said it wasn't something that jumped off the page, given my other symptoms, but I made an appointment with a rheumy anyways (who may just shrug their shoulders all the same). Thx

Got my ANA back, and it was 1-40 titre --- which I was told was not really enough to suggest autoimmune (as a small % of the healthy populous can test positive for this, and a larger number would be more out of line, like 1/360). However, I've also read that the number could indeed go higher if it is autoimmune. I suppose the issue is I don't have any symptoms (yet) to go along with this. No joint pain or fatigue per se. I'm only 4 months into feeling this way, so who knows. If anyone has better info, or has gone through this already, I'd love to hear. I have a rheumy appoint on the 31st of July. Maybe they can shed some light on it as well. Very frustrating to feel this way and not have an answer (but suspect one anyhow).

Hey! That’s good news. Yeah, the doctor doesn’t do it. The technician even went as far as to ask me “Why do the doctors think you should have this test again?” Keep us posted. I also had a normal TTT at BIDMC. Just remember: there are non-POTS Dysautonomias. How were your b12 levels again? It’s also interesting that you get fatigued and I have yet to get tired after all of this. I can’t sleep and never feel exhausted (wish I could). I don’t hold out much hope for the psychogenic. It’s an iffy and highly questionable area. It’s different than somatic pain I think, and should be met with some skepticism.

I have the methyl but not the folate. Though I’ve never taken them because I bought them the day before I found out about the high b12 and would like to know if there’s a reason it’s staying in my blood.

That’s very interesting. I don’t have POTS or OI but I know I have some autonomic dysfunction; perhaps neuropathy. No official diagnosis either. I also have severe health anxiety and most my texts to my mother is about how I have something fatal. I can’t seem to shake it. I used to be on Citalopram but had since gotten off all SSRIs and benzos, instead opting for medicinal marijuana. Since I’ve been ill or whatever, I can’t tolerate the latter. I leave my apartment but I sometimes just sleep more than I should because I’m so depressed and just think death is around the corner. I might ask my doctor to put me back on and see if there’s a difference.

926. No supplements.

Just an update: my value was 926. Normal range is <900. So it’s only slightly high, but needs to run a “CBC with differential” and go from there.

I don’t supplement. Which is why it’s concerning. I’ve heard it could be high because of malabsorption as well. I’ll just have to follow through with my doctor. Rule out other things hopefully. 🤷‍♀️

I will. I just have an awful feeling about it all.

My doctor said I have elevated B12. And of course the possibilities of that suck too. Anyone else have this?

https://powerthroughpots.wordpress.com/2018/07/06/5-things-i-learned-at-mayo-clinic/ This is an article I found about a young man’s experience with the Mayo Clinic and their unique approach to combating POTS. For anyone looking for advice on how to fight back — this has some tools I thought made sense.

I go to BIDMC. Let me know how it goes? Like, what tests get done. I had a TTT there and it was negative. But it’s all they did sadly. Nothing else.

Maybe. I’m frankly just tired of tests. I have a follow up on the 13th. Maybe I’ll try once before then Zer0

I’m not sure actually. I’m not a sugar guy, don’t eat candy, and don’t even eat gluten. Before this I had lost 90 pounds (have gained 30 of it back since onset). But I’ll look into it. I’ve just sort of resigned myself to autonomic dysfunction + coexisting condition...or worse.

I would say I'm thirsty a lot. I was peeing a lot at night early but I was also drinking 200 ml of water per day. So I don't know anymore. I just feel like a guinea pig at this point.

I'm on mirtazipine; Depakote; gabapentin; rozarem; vit d3. I've not had a full iron panel. Yeah. The scary part is really the not knowing. The scary constellation of symptoms on a day-to-day basis. I'm just not holding out for anything hopeful. That it's not been an easy fix tells me something is very off. And it ******* blows.

@britton Hey, I hope you're getting some sleep. Mine is still wonky but they gave me gabapentin and that at least makes me drowsy --- something I wasn't even close to getting to until 6am in the morning, after a long crappy night. It makes me tired to the point where I don't want to wake up, and I can't fully say it's "restorative" sleep, but it's something. I think some behavioral adjustments will have to do as well (INCLUDING to stop expecting great sleep every night, as I did in my pre-illness). We have to lower the expectations a bit. That in itself might help (don't know the %s just know it DOES help in the long-run). Best of luck. Zer0

Yes. It’s common. Medication can of course do this, but I get dry eyes and dry mouth. Sometimes it’s from sleeping with my eyes open. If it ever begins hurting you might look into Sjogren’s. It’s an autoimmune disease.

Definitely not alone. I don’t have the full array of symptoms. But enough of them. What you’re saying speaks to everyone, no matter the array or spectrum. I might very well indeed develop POTS...though I don’t currently have it. There is life amongst all this. I’m maybe a poor example because Ive dealt with it all without much grace. Others might tell you this but you need to find ways to fight back, even if just a little. Show your body who it really belongs to. If it’s getting up to make coffee...then except that task as your new mountain. I wasn’t bedridden but I’ve lost my primary job (used to work two and commute 4 hours a day). I was impaired cognitively and emotionally and somewhat physicallly. I can’t give you much advice for managing symptoms but there is a wealth of experience and knowledge on this site. You’re gonna learn a lot because many have gone through exactly your state of mind and your predicament. It’s unfair, it’s dehumanizing, and it humbles everyone. I feel sick to my core that I was “fine” 4 months ago and now I’m stuck in a place where every day is not a gift; it feels more like a sentence someone handed down for a crime a I didn’t know I committed. I’ve been retracing my steps for my lost life like a post pair of keys. But sometimes the keys are in your hand in the very end. It doesn’t feel that way right because everyone at some point here has felt utterly robbed of something: our certainty (peace of mind); out comfort; and those awesome moments where one can’t wait for the future or even looking forward to something. I used to look forward to so much and now I’ve really tempered my expectations of normalcy. I still have goals but they’re no longer independent of limitations. They’re welded to them now. I hope you improve and continue to improve (that is the acceptance I myself continue to work: modifying my goals as MY goals and no other standard). You can do it. Best, Zer0

No. It’s sound advice. I also hope I’m not bedridden. I work at a bording school so I’m just playing Mah Jong tonight...for 3 hours.

Thanks for the long and thorough response. Yeah — I don’t think I have the POTS or OI kind of Dysautonomia but it still looks that way. I agree about the pushing myself to unhealthy limits. I probably chose the wrong day abx wrong season to try and do this. I mean, I saw the other folks struggling with the heat. So a poor choice on my part. I just didn’t want to be in my room all day or avoiding people like I usually do. What do you suggest for less taxing exercises? I basically want to keep my body functional. I am symptomy a lot. So I’m just sort of accepting that those aren’t just going to disappear, poof. I’m pretty sure I do have “something.” It may very well just be a mild dysfunction. I don’t know. I still fear the worst. It’s that void of the uncertaint that crushes me mostly—is it this, is it that, how long do I have on this stupid rock??? Thanks again for your thorough response. You guys have helped me out a lot. Best, Zer0

@PistolThey're cannabinoids from marijuana plants (cannabis). One is psychotropic --- the THC --- and other is CBD --- which doesn't have the euphoric feeling but instead has more directly medicinal properties. https://www.marijuanabreak.com/cbd-vs-thc

Not yet. But I’ll look into that. Good to know.

That is some bizarre stuff. That does make a lot of sense though—phantom sounds. Hopefully you get some relief.

@TCP I tried it 1:1 last month and it sent me to the ER with violent shaking. I think I need the CBD-only. What’s odd is this: I used to recreationally and medicinally use marijuana. I had depression and anxiety and hated SSRIs and benzodiazepines (still hate benzodiazepines). But once all this came about, I couldn’t tolerate mj, caffeine, or alcohol. I’ve been sober as a priest for 4 months and I really miss rolling a joint after a long day at work. But it’s legal in Massachusetts. But I’m weary still because CBD is still so unregulated that there’s a lot of false product out there, along with a lot of suffering people. That can lead to a lot of exploitationof that suffering because we get desperate for a cure-all (or a cure-some, at least). Which is our right obviously. My sister has her card so maybe I’ll experiment again with it. I made a horrible mistake when I got the 1:1 THC/CBD. But I think I can tolerate CBD a little better. We’ll see. I think it’s one of this case by case things.