RecipeForDisaster

I have a feeling that with my newly positive ANA I will have doctors wanting to draw a lot more blood. I'm starting with trying to make sure everyone has all of the results now that I am seeing 7-8 different doctors.... at least we don't need to run any tests more than once.  Hopefully I'll only need a few tubes drawn most of the time, or maybe I can get some saline replacement afterwards?

I absolutely never get thirsty, except once in a while if I'm very shocky (cold and gray on the floor time) but then I'm too nauseous to drink. In the past few months I have started to lose my hunger as well. I went more than a day without eating and just never felt the urge, nothing looked that appealing, not even my favorites. I didn't try a zofran because I wasn't really nauseous, just not hungry. My doctors don't seem to be interested because I haven't lost weight lately. I'm already fairly thin, and when I force myself to eat, it's fortified high calorie stuff to make up for missed meals.

i make myself drink and I do get my salt and water in, I just wouldn't drink at all if I didn't "need" to. Not even when it's hot, although I hardly sweat.

Has anyone tried this or, more importantly, bought a unit to use themselves? I can't see how it could be harmful, and I depend on my TENS device which is kind of a similar kind of thing. I'm intrigued! And sort of desperate. I saw one unit, that goes on the ear, on a British site for 599 pounds...

This is one of my most distressing symptoms, also, and none of my doctors are too worried about it. If it happened to them, they would be! Metoprolol has helped but not removed this.... maybe 40 percent improvement and I sometimes wake at 2-3am from it anyway.

I still kayak, ride horses, hike, etc. but I feel awful during and after, and sometimes end up lying on a trail somewhere for hours. Even stirring batter is too much for me... but I don't want to lose my fitness and I do enjoy being active.

Hardly any of my doctors seem too interested when I show them this kind of data, or on the 30 day monitor, hitting 168bpm from slowly walking... I have heard it explained as lack of fitness, which I know I do not have  just because -they- would not be keeping fit in my situation doesn't mean I don't fight to do so anyway, risk of fainting or not. I wish they could spend just one hour in our bodies.... it would make SUCH a point.

I know, there are only a few kinds of specialists I DON'T see as it is!! I will definitely mention my sister, and I will also let my geneticist know about all of this (she didn't know but what to test me for). I think my grandmother has RA. I wonder if I'm going to get 4 diagnoses or just one big one that explains everything.... I HATE not having a label!! I tested negative for adrenal problems, but my ACTH stim was at 4pm and my cortisol soared, so I'm not really sure about that. It sure seems like my endocrine system is off even though i was cleared. My renin is high.

The potential damage to joins and organs is super scary. I hope someone starts to help me!! The doctor who ordered the tests hasn't called and I don't see him until 1/4. He doesn't like to talk about lab work on the phone.

All i can tell you is that different beta blockers have different effects on different people, so it might be worth trying another one. I haven't but tried ivradibine, but I have not gotten any change in heart rate or worsened adrenaline rushes with midodrine. Just chills and scalp crawling/tingling which is tolerable at 5mg for me. Nothing helped the adrenaline rushes except metoprolol so far.

I can't help much, but I may have had two TTTs that weren't "done properly" although I think the staff did their best on this last one. My baseline BP and HR were way up when we started because I was in so much pain and afraid about the biopsies they were doing. I don't have my results but I suspect "normal". It's very hard to get yourself to be totally yourself during these tests. I don't know how the heck they expect us to do it.

Isn't it frustrating that they can't sort of see us in our daily lives? If they showed up at my house now, they would see my real vital signs. I have quite the ability to go up when I'm in pain or scared (luckily or unluckily that isn't often.. I probably wouldn't be presyncopal if I were in pain or scared all the time!!). 

When I turn or raise or lower my head much, I lose my vision and get dizzy. During the TTT, the doctor had me try that, but my BP was higher than usual and I had a hard time moving with the Doppler strapped on my head. He said the Doppler was normal for that, ugh.

I didn't have an upright MRI because the doctor said it had to be a standard one first for a baseline, and that I have to go to Albany for an upright one (I would go).

i never really thought I had EDS but who knows... something has to be behind the ANA, maybe Sjogrens although I don't think my eyes are dry. My throat is! I don't think I'm that flexible. My sister had huge cervical fusion because of numbness, weakness, and potential loss of function. I think we have the same neck  hers is just 12 years older. She did get a lot better from it but I am not sure I would go through that. She is a surgeon and apparently if she kept working with her neck un fused she would start to get paralyzed.

From the sound of the doppler (if that's meaningful) , and the doctor's seeming lack of interest, I don't think my Doppler indicated what I suspect. My BP being so much higher(I think) than usual, I think, made my perfusion much better than baseline. I often have a decent BP and HR and dimmed out vision and presyncope, so the Doppler is a really interesting test. I'd love to try it in a "normal" setting!

i suppose I could be used to joint pain and am just not noticing it. My neck MRI showed some pretty bad changes like discs being out and bone spurs, and I never complain about neck pain but it's there. I don't really want lupus, but I guess somethnig treatable would be good. Being taken seriously would be great, of course.

i still can't understand why an intelligent neurologist would think that cutting into my body during the TTT wouldn't skew the results. I guess maybe some people are totally chill about that, but I am not. It was hard to calm myself and I am NOT a nervous or fearful person when it comes to needles and stuff.

I am achy from a bad neck and back, but never complained about joint pain. I know whenever I have an infection (fairly often, respiratory or cellulitis after a tick bite) my dysautonomia symptoms are a lot worse.... I just never really thought about any autoimmune disease. A new chapter!

i can't even get my dysautonomia diagnosed... 

I had my TTT yesterday and they actually did the very painful SFN biopsies (the lidocaine injections HURT and the rest is merely creepy and uncomfortable) DURING the first part of the test. I was very uncomfortable and afraid, and I am positive my BP was well above where it ever is at home. I haven't gotten any results yet but I believe "everything was normal".  I heard the BP monitor alarming here and there but I don't think it followed a helpful pattern. This is extremely disappointing!! I'm nervous enough during a TTT that I am nowhere near my baseline anyway, but I was very tachycardic from fear and pain.  I lost my vision when I was tilted, but it came back after a bit. The Doppler attached to my head squeezed hard enough, and cut into the bottom/back of my head, to ache badly as well... it was just like a vise grip. I so wish I could have this done when I am my regular self!! It was not a good day at all, but I'm very glad it's over.

One "diagnostic" thing was that I felt absolutely horrible off my meds, so I know they are helping.

I got home to some lab results that my ANA is now positive. It never was before. My white count is up too. I'm not worrying too much about it because I don't see my hematologist until 1/4, but I am a little intrigued that maybe we have found the problem. Any thoughts?

I have done this kind fortified electrolyte and sugar solution because I am not really eating. I haven't found that it makes a difference for me, unfortunately. I do sip a lot of broth...

I took adrenal support formula for a couple of years. I thought it was a slam dunk, but it didn't make much difference for me.

I will literally eat salt by itself. I have tried up to 8gm per day with no help, but I definitely crave it and my regular diet is loaded. I think my absorption is okay, and the way I see it I see that if I'm not dehydrated, and I am not, my body doesn't hold onto extra water and I just pee it out. I think I need extra fluid, not my "normal" level, if that makes sense.

We do believe that my potential hypovolemia was exacerbated by losing all of that blood  I never thought of that as being a risk, but so many tubes were drawn! 

The hematologist actually mentioned getting IV fluids today, but his office and suite are so far that I can't drive there alone. I don't have anyone to bring me until Tuesday. He really had no other ideas until all of the bloodwork comes back  

Since my husband is a cardiology nurse, I want to arrange it so that he can legally give me fluids at home. He wants to do it NOW. Does anyone know about how to make that legitimate?

I should mention that I was already taking a lot of iron, 325mg 2-3 times daily. I don't eat meat, but my ferritin had been up to normal for a few years (went from 6 to 55) and I was not anemic. I don't know if anything else would help me to replace the blood. Drinking fluids hasn't been helping me feel better. 

Thanks. It might even have been more than that. I suspect my blood volume was already low. Any idea how long it would take to regenerate that much blood? I am really happy with this doctor and was feeling hopeful until this happened and didn't get better in a couple of days. 

So, my husband has really been thinking that I am dying. I keep assuring him that this is how dysautonomia goes, that it's not really life threatening, etc. etc. Somehow most of my doctors are not concerned about BPs into the seventies and collapsing, but I am getting treatment and more testing. I haven't been afraid so far, just annoyed and curious.

I saw a new hematologist/immunologist on Tuesday and I really think he is going to figure me out. I still have no diagnosis and am not fitting any really straightforward dysautonomia category, though it's clear I have dysautonomia of some kind... temperature regulation failure, hypotension, tachycardia, and lots more. I think maybe something else, maybe immune, is going on too. I've had endocrine, cardiac, etc. workups and am getting autonomic testing "done correctly" next week. I'm on metoprolol, mestinon, and midodrine for this and generally they have gotten me feeling much better than I did.

I only started mestinon a few weeks ago and found it made a big difference in my ability to walk, and it bumped up my BP by 8-10 points once I got up to 60mg TID. The same happened with midodrine... it helped me function and have a better BP.

On Tuesday, I had a large quantity of blood drawn for the new doctor, something like 15-20 tubes (not sure but it took forever with many switches of tubes). I'm sure the doctor didn't realize how many tubes worth of blood his lab orders required, and he laid me down to have it all drawn with a butterfly and I did not pass out. I'm not afraid of needles or squeamish, but since I have have had low BP, I tend to pass out during or after blood draws (now I am realizing that this is only a big problem when lots of blood is drawn, which is most times, but I haven't had it done in 6 months and a lot has changed) I started feeling quite a bit worse during the last half of blood drawing, and have not gotten better. I can't sleep and am too queasy to eat, my BP is maxing out 15 points lower than usual on all of my meds, and I just feel horrible. It does seem like I take a permanent turn for the worse every 4-6 weeks and that's what scares me. I do alright for a while and then my old meds are not enough anymore, and my baseline BP goes down for good. I haven't felt this bad since before I was started on any dysautonomia meds. I'm freezing and miserable and just can't do anything, too wobbly to get around. I have a call in to this doctor, and am putting compression stockings on, and forcing broth in, but I have to admit I am getting scared of this being my new life. I could deal with my previous "new baselines" okay, but it's really crossing a line now that I'm not even comfortable lying down, can't eat or sleep on all of these drugs.

Does this make sense about the blood draws, or is it a coincidence?

I must have something other than POTS, but I did have a TTT while off medications, and one reason why I probably "didn't meet criteria " for another diagnosis is that when my BP dropped it didn't go a full 10 points every time. That's because I was already low, and 10 points between 130 and 140 is very different than between 94 and 84. The "super awesome neurologist guru" who ordered my testing before seeing me did not give me the pleasure of seeing him after that. What a waste, and a terrible experience. My next neurologist actually saw me and spoke to me before ordering testing. I mean, did the first guy imply that I had nothing wrong with me because it didn't fit his neat little boxes for one of a few diagnoses!?

I do have the awful nighttime tachycardia and rotten sleep.

The part about not actually seeing the neurologist resonates the most with me. I was excited to see a dysautonomia expert neurologist in Boston and waited almost a year... he required testing before I saw him and I didn't meet the criteria he wanted, so I never saw him and was ditched. What a feeling!! I thought he was going to help me. I have seen about 6 more doctors since then, and 3 have each put me on a different helpful medication. It's crazy but it's starting to finally work, I think! Hang in there, keep fighting. I don't feel good but it's a fair amount better than a few months ago. I'm on a similar regimen (midodrine and metoprolol plus lots of unrelated meds) with the addition of pyridostigmine just this week-it's helping.

My cardiologist told me to take beta blockers at night, but I can take another dose or two throughout the day if needed-even though it's "24 hour" time release. 

I definitely didn't have an increase in syncope once starting metoprolol. Maybe a few more PVCs than before but that's about it. Now my heart rate "only" goes to 165! 

I'm working on trying to increase my midodrine without intolerable side effects... and am starting mestinon as soon as the pharmacy gets it in stock. 

This is my current Rx treatment regimen. It's working okay for me... I would say I'm 30 percent better on each of these. Midodrine has helped to cut down on passing out or collapsing. I am still not doing great, but it's good to have these. Nighttime is bad because I can't take midodrine when I need it, though. Hence why I'm out of bed before 4am for no reason today

For me, I didn't have significant worsening of anything with metoprolol. It makes me a little tired for an hour or two after I take it, but I do that at bedtime so it's welcome.

I can manage this symptom at 5mg but at 10mg it becomes an uncomfortable freezing pressure in my chest. I haven't tried it again because it was pretty bad. I'm hoping to get to the point where I don't get freezing at 5mg either.... but so far, I do, and extra clothing hardly helps.

I have been vegetarian since 1989. I did have deficiencies in B12, iron, and D as I wasn't taking those (as a woman I think I would have needed iron supplements anyway no matter how much meat I ate). I eat a varied and very healthy diet, if anything, including -too many- nuts. I eat mostly vegetables, whole grains, and legumes. The extremely low B12 could have caused nerve damage and led me to dysautonomia... otherwise, I don't think my diet plays a role.