Acute Respiratory Failure? Am I Just Being Paranoid?

[trappedat20]

@Juneflower Haha nothing is weird at this point. My doctor could tell me I have some kind of zombie virus and I probably wouldn't even bat an eye at this point lol. No, they haven't. What kind of poisons are you talking about?

[dkd]

I was kind of wondering about heavy metal poisoning. Also a virus. What other tests did they do for your liver? There's some reason your enzymes are elevated. Are they going to recheck them? Maybe a supplement you've been taking has your liver working overtime???? I don't know, just throwing stuff out there as possibilities. You've got enough to worry about already without me adding more!!!

[sue1234]

Speaking of heavy metals and elevated liver enzymes, have you had your copper tested? Ceruloplasmin is tested alongside that. They both check for Wilson's disease. I had mine tested a few times over the last couple of years, and I keep showing an elevated FREE copper, but not the right copper/ceruloplasmin for Wilson's. I have no clue what that means. I've read some research where they say it can predispose someone to Alzheimer's, but haven't asked a doctor about it.

[trappedat20]

@dkd No, no, not at all. Please, I want suggestions. I feel so lost on the whole situation. My doctors have given up on me and I'm getting progressively worse at a fast pace. That doesn't look good as far as my primary condition goes. Tbh I'm not really sure what they checked me for. I really wish I had these records because none of them have done anything to help me and I need to know what things to cross off my list of possibilities. I know they checked me for infections, hepatitis, vitamins, electrolytes and all of the basic obvious stuff. If it's not an obvious test than they probably didn't check me for it. I know they checked me pretty extensively as far as the liver goes though so if any of those would elevate my liver enzymes than they probably did. Nobody has really helped me try to find the cause of my dysautonomia though. I'm not sure who I should go to for that that will sit there and help me cross things off a list of causes of dysautonomia. I don't know what kind of specialist to see. All of my doctors dumped me and my neurologist is only interesting in finding out what's going on with my heart rate.

I just looked it up and apparently you are suppose to do a hair mineral analysis for heavy metal poisoning, so I haven't had that done if that's how you test for it. I looked up the symptoms but nothing really stood out. All of the symptoms I have are also dysautonomia symptoms. It's really hard to find the primary cause when you already have a laundry list of symptoms because you don't know what's what. As far as the virus thing I'm not really sure. From what I understand most people get sick with a virus and than develop dysautonomia very shortly after. The last time I got anything but a common cold was about 3 years ago when I got strep. I got sick with the dysautonomia about a year ago though so that doesn't really make much since. I will say that I got shingles when I was 12 and than again when I was 16 which doctors found very odd. Most people don't get them until they are old anyways, but I got it twice as a teenager. That was nowhere near when I got sick though either (almost 5 years ago.)

One of my liver enzymes was 405 (or 407 something like that) and the other was 836. Everything else was normal though. Like bilirubin was normal. They did an ultrasound of my liver and a bunch of tests on my liver and nothing showed up abnormal except those 2 numbers. I've been to the hospital 4 times in the past year though and that was the first time they ever said anything to me about my liver enzymes being high. They even said that to me. They said my liver enzymes were fine in the past. I'm not quite sure how they go from okay the past 3 times you went to the ER to 20 times what it's suppose to be to where you freak everyone in the hospital out. I would have to wash down like a bottle of tylenol with a bottle of vodka for a few days for it to change that quickly. I was in the hospital for three days and on the third day my number had dropped to 790 something and they let me go because it was slowly dropping. I haven't had my numbers checked again because I'm not sure if it's important or not. If it's normal again, or near normal than I still know nothing except why did it go so high to begin with. My husband had me taking a supplement to gain muscle but I was taking a low dose and it was only for 2 weeks (leading up to the hospital) but he said that it normally only elevates your liver enzymes slightly and that at most if I were taking a high dose for several weeks that it MIGHT go up to like 150-200 but he said he never heard of anyone's going that high, especially on such a low dose for such a short period of time. It means that either there was something else going on that elevated my liver enzymes or maybe my liver is just really weak? That's why I kinda want to get my enzymes checked again to know for sure if that was it. I'm VERY careful with my liver now though. I really never though I had a reason to worry because I don't do anything bad. I don't even drink a little. Here I was so worried about my nervous system and my liver enzymes are 836. Regardless my liver enzymes definitely should NOT have responded like that.

[trappedat20]

@Sue 1234 It's funny that you say that because about a month and a half ago I was reading about copper levels and it seemed relevant to me. It felt like I should really get them tested but somehow with everything else that's been going on that thought went out the window. Thank you for reminding me. I will put that on my list of things to do if I ever get a doctor who is patient and willing to look for my cause rather than just drop me.

[sue1234]

Maybe see a plain internal medicine doc and let him figure your liver out. I mean, where there is smoke, there's fire...maybe? Related or not, the liver needs to be addressed. You will have to keep us updated.

[trappedat20]

@Sue1234 I'm trying really hard to figure out the cause of my dysautonomia and because dysautonomia has such a laundry list of symptoms that fit with most of the causes it's really hard to tell. So far I've been trying to piece together things by looking at symptoms that don't belong to dysautonomia. So far these seem to be

1. Neck pressure/pain towards base of skull. This started or got really bad and noticeable around the time that my dysautonomia symptoms started. I also have a lot of problems with my neck like a degenerative disc, my neck is starting to curve the wrong way, arthritis in my neck, and I had two fractures that healed. This is why I was so quick to believe all of the claims the chiropractor was making which turned out to not be true. Then I felt so certain it was a chiari malformation based off all of the symptoms and it felt like the puzzle pieces fit but an MRI of just my brain (not the neck or spine) and a catscan said that I don't. The doctor at the hospital told me that I don't have a chiari malformation because the catscan would have picked it up because it's picked up Chiari malformations in people who didn't even have symptoms. People on here have told me not to rule it out until I have an upright MRI though because that's what the golden standard is for diagnosing a chiari malformation. Either way whatever being wrong being related to my neck and the back of my skull area have been the most suspicious thing ever since I found out I had dysautonomia. I do know that whenever I feel a greater pressure in that area I'm normally a lot more sick. I need to look into other things related to this area of the body and things similar though. It could be just that I have a really screwed up neck and I have dysautonomia, or they could be related, but I don't really have anything else to go on anyways.

2. My doctor suspected Myotonic Muscular Dystrophy at one point after doing that finger test for myotonia. He never looked into it further and he's the same doctor who dropped me yesterday so I'm not going to look into this unless I get another symptom that points towards it. I don't have that characteristic hollow face look, I don't have cataracts, and I don't have insulin resistance which are some of the symptoms so I've never looked into it further.

3. I was taking creatine powder for 6 days and felt a little better and I started craving it really bad ever since then. I crave it like 20-30 times a day, no lie. It is a type of supplement that most people put in water and I just sit there and lick it and want more even after I've taken my dose. It's like pica for creatine powder or something lol. My husband has been suspicious of mitochondrial disease ever since.

4. The liver enzymes that showed up really high once, but were normal a few months ago when I was in the hospital.

My biological mother has MS so I probably look into autoimmune diseases.

Basically I have nothing much to go on. I have a gigantic list of symptoms but unfortunately most of them can be said for dysautonomia and so nothing really stands out except the four points I mentioned. Besides the neck pain/back pain getting MUCH worse around the time I got sick nothing stands out about the time I got sick. I wasn't in a toxic area, I didn't get sick with a virus or anything, I didn't have an injury or surgery or pregnancy or anything around that time. I really doubt the Myotonic thing and have only kept that on the list because it was brought up at one point and considering I don't have much to go on I shouldn't through out what I do have.

[trappedat20]

Okay, I guess I have a new symptom. I've been trying to sleep for the past 30 minutes but can't because I keep having a few myoclonus jerks per minute in my right leg. I'm not exactly sure if that is what it is because it's 1:45am and I'm tired but that's what keeps popping up. My right leg keeps involuntarily jerking/kicking a couple times per minute and this has been going on for the past 30 minutes and I really want to sleep but it won't stop. Ugh. As far as I know this doesn't seem to be a part of dysautonomia. Does anyone experience this or know what this could be hinting towards as a primary condition?