RecipeForDisaster

I really doubt it - mine was over 3L and I definitely have low blood volume. I agree on the salt and fluid intake... mine were high that day as usual. I have trouble keeping my blood sodium high enough, which is so weird on 15gm salt daily.

Same for me, I have a ton, and the electrophysiologist gave me options to treat with antiarrhythmics, ablation, or nothing. I am such a mess that I’m going with nothing for now. They bother me (I have a lot of bigeminy) but he said they are okay.

I WOULD love to know where they’re coming from. Heck I’m only 40. 

Lots of seemingly unrelated ones! I am hoping there’s a link. Many are not diagnosed officially. If they were, I’d say 8-10?

Interesting! This and alpha lipoic acid have made my nighttime neuropathy flares tolerable. I don’t think it’s helped the rest of me, and I used to take it in the morning. I wonder if I need higher doses. It’s been pretty magical for no longer waking up with foot pain, though.

On 3/13/2021 at 12:22 PM, MTRJ75 said:

you call your insurance company and request one. It took me about 5 days to get one. I’m not sure if all of them offer this, and I think you have to qualify by having a certain number of visits or specialists or whatever. Basically, be complicated. 
 

NJ 

Does everyone have a case manager or do you have to request one? How does that work? 

I’m working with a case manager and it’s helping! She’s from my insurance. She fights for me... getting orders, making doctors and pharmacies do what they’re supposed to, getting authorization. I wish I got her involved much earlier!

If I remember right, you’re seeing people in Boston? Feel free to PM me about that. 

My IL 10 is about double the upper limit, and my growth hormone is low for my gender and age. Just curious if anyone else has had these. My neurologist ordered the tests but of course he says "my labs are fine". Why order them if you’re going to brush off abnormal results? I think he does it for studies he runs.

Yeah, that happens a lot. This guy used to have great staff. I have several doctors with awful gatekeeper staff that don’t pass on messages and don’t let you talk with the doctors.

My level is more than double the upper end of the limit. I can’t find a lot about what it actually means(other than associated with fatigue), but the doctor does a lot of research and I suspect he’s compiling data. He hasn’t gotten back to me after running a huge number of tests. My HGH is also a bit low. Just curious!

Well, he’s not totally helpful but he does try. He moved and his new medical assistant is not so great....

I had Moderna, finishing the course a few weeks ago, and had no issues except for one day of aches and malaise the day after the second dose. I have pretty bad hypotension and other symptoms in general.

I know! I have good insurance, and she takes it, plus a lot out of pocket. I think I'd end up between a rock and a hard place with her, no matter how groundbreaking she was.

She is an MD. It’s just like she doesn’t want to do that part!

She’s in NY. I don’t know if she’d be that helpful without writing orders - now I need to convince another of my doctors to carry out her wishes? I don’t know if anyone else who does the immune system end of things.

I found a great sounding doc here - she specializes in immune and allergy. Same kind of thing - lots of money up front, it costs money to ever talk with her office or ask a question, she won’t write orders, so many rules. I didn’t think it’d be worth the cost. Too bad, I am sure she is good.

I also think that if you’re not dehydrated or hypotensive , they can’t understand why you’d need fluids, or why they’d help. I know in all of my years of training, there was never another reason taught to give fluids... it’s like giving extra potassium to someone with enough potassium, to them. I can see both sides of the coin, but man, can I ever tell you that it doesn’t matter what my vitals say if I need fluids. I always figured I’d bring some studies with me if I ever had to go to the ER (if I was alone with no one to place my IV?).

The other day my BP wasn’t even that low, but my pulse pressure was. That was enough to make me decide to spend the day hooked up to my IV pole. Each day is fairly bad, so it can be hard for me to decide when to do it. Even though I have a cache of fluids and supplies.... I don’t have access and can’t get it, and have only so many veins which I don’t want to scar.

8 hours ago, Sarah Tee said:

@yogini, all good points. I am in the dark at the moment as to what is wrong with me ... I am waiting to see a dysautonomia specialist (cardiologist), but if he rules out dysautonomia I don't know what I will do. I am petrified that no specialty will "own" me if I don't fit anywhere, and I'll never get any treatment for my OI/presyncope/fatigue symptoms.

I can only hope that the dysautonomia specialist will refer me on, not just send me away.

I hope so too. This is kind of where I am - so far I don’t fit anywhere, but my doctors are mostly helping me anyway. A hematologist is doing a lot of it! It doesn’t matter it’s not his specialty, he can see what I need. So don’t worry about this yet...

I’ve done it tons of times, and am still amazed by the effects... "hey, I’m happier than I was" "I can bend down to pick something up!"

I know I’m working on a referral there!

8 hours ago, Sarah Tee said:

@RecipeForDisaster, do you find the IV fluids helpful, despite the inconvenience?

Oh yes, very much. I need 2L to make a big difference now, but it makes me feel like the old me. It’s crazy the little things we’ll discover later. For instance, my hands and feet were suddenly warm! That never happens no matter the temperature. I guess circulation helps!

Unfortunately, oral salts and fluid haven’t helped my apparent blood volume issue. That’s why I’m dragging an IV pole around today, again...

It wakes me partway through the night, if I can manage to go to sleep. Even on a lot of carbamazepine. I think part of this is from my CPAP mask touching me, but it fits better than any other and is loose. I haven’t found that ice helps. But as far as my tooth pain, yes, if I sleep until 6am, it is GONE at that time and gets worse as the day goes on. It used to get bad at 7pmish and has gradually moved to 8-9am! The under - tooth tenderness is much better, though. I’m positive it’s not my teeth, partly due to that, and partly because it does move (even if the worst of it is always in one section of jaw)
 

I'm a bit afraid of amitryptyline. I guess I’d take it if I had to.

I’m much more afraid of COVID complications than the shot. I’m so relieved to have partial protection. I’d say I’m back where I was a few months ago.

I just got my second one this week. I had one day of feeling achy, feverish, and very cold, and was kind of happy that the vaccine was working. I didn’t get much from the first shot except soreness at the site. I am not doing too well in general, but that started well before the vaccine.

All I can say is some of us are weird LOL. I fit into that... I don’t match any dysautonomia except maybe HYCH and that does not explain all of it. I think maybe the trigeminal neuralgia is another clue that my nervous system is broken? I have other stuff going on, too.

I'd try the stockings... my legs are grayish purple so I don’t know if they look like pooling, but they help. I’d just rather use the SCDs because they’re so much easier to get on. Drinking broth may also help you.