Raisin

I asked my hubby to get these if he sees them. We are supposed to go to Bed Bath and Beyond so maybe I will pick some up. I use my cooling vest and like that alot also.

Good for you. It sounds like you are choosing to take care of yourself. I applaud your courage. It is courage that I hear in your message and I wish I could be there to hand you a salty snack and a Gatorade when needed. You go girl!

Yeah Goschi, when I am walking (slowly at that), I seem to do better than standing still (as many discuss here). Sending you thought flowers to your hospital room! Glad you got a giggle. Maybe we should charge admission to our rooms for these docs to check us out! A quarter a mosaic......

My vascular pots doc said he was quite impressed with my test results re the TTT and hemodynamics test. I told him that I always like to impress others. Lol! I guess if we are going to not feel well, then at least we can make it impressive. I am imagining you laying in the hospital bed and a group of docs surrounding you and you yell out, "check THIS out!" impressive, eh?! " Now that I am thinking about it, my "mosaic" shows up when I am warm. I know I have anhydrosis in my limbs...maybe it is my body's way of trying to cool myself off. I would think the hospital would be quite cool though. Thinking...thinking...thinking.

Hi Gosch! Sorry it took me so long to reply! Interestingly, my skin does not get crazy mottled looking even though I guess 40% of my blood was pooling just upon sitting up and not standing yet. I do notice it sometimes but not alot. But, I know many others talk about this all the time as a symptom of blood pooling. I started taking 2.5 mg of Midodrine 3times a day and now I am up to 5 mg. three times a day. So far, very helpful for me I think. Don't feel too bad about the shaky thing in the hallway. I talked earlier about how I think I have some "white coat anxiety" now. The docs are starting to make me nervous! Ha! It is very natural considering the pathways that alot of us have been on. Keep rocking it out!

I know exactly what you are talking about. Sometimes I am fine and sometimes I have to sit down on the kitchen floor while trying to make toast because I feel lightheaded and I am breathing deeply because I feel like the air I am taking in isn't "working" . Ha! I have major blood pooling and the midodrine I take seems to help (not always) with this. It has been worse lately and it has been humid but I don't know little_Blue_Jay if it is correlated with the weather for me. Maybe. I am the only person in the neighborhood who can't wait for Fall! Lol.

Hi Goschi! Sorry to hear about hospital but glad they are trying so hard to help you. Have you had a hemodynamics test to check for blood pooling? (I think that is the name of the test I had). Mine showed pretty extensive pooling and the midodrine seems to be helping me quite a bit. Feel better!

Corina, an exercise physiologist told me that a treadmill tells your legs what to do and so it kinda "takes over" for the brain a little bit. So, it makes sense that the treadmill would "retrain" the walking. I did great on a treadmill even though I have to walk with a cane. Interesting!

Thanks Chaos! I started to read this. It is a good article.

Chaos, what is that information? I would be interested in seeing that. I also have that problem big time and I use a cane pretty much every day. The longer I walk, the worse it gets and it gets bad enough that if I keep going, I use the cane and a friend's shoulder. It is a bugger. My legs don't feel heavy, they just won't "land" right.

Yes Blue. I know EXACTLY what you are speaking of. I, though, have had a couple abdominal surgeries (appendix and gall bladder). I finally,, one day, felt a lump right near one of my laparoscopic incision scars right under my rib cage and right in the center. My surgeon said he thinks it is a small hernia. Then, my regular gp said he doesn't think it is a hernia but just scar tissue. When I had lost weight from my consistent nausea, alot of that pressure dissipated. It drove me nuts before, especially when sitting up (like trying to drive). I still catch myself, sometimes, holding my arm over that area without even thinking about it. I hope you feel better!

My Psychiatrist once meant to type SSNRi's and the name of an antidepressant that starts with a P. instead, his phone autocorrected to "sunrise" and "prostitution". Oh My Gosh! I laughed so hard. Then, I texted him back saying that I haven't tried prostitution for a remedy and asked if that was his "doctor's orders". He was sooooo embarrassed! LOL!

I think about going with the no makeup, way casual garb but then I think they are going to say, This girl is depressed and THATs why she feels so bad. I guess I can never win.

Yes, the QSart was not bad at all. I think the apprehension of the shock was worse than anything. Once they show you, you will realize that it is very tolerable. I also did the valsalva test. No biggie. Just blowing into a tube while you are laying down. You do have to blow fairly hard. Very doable. The tech I had is named Narkeytah and she is super nice. She explains everything nicely and if you have any questions, she will answer them. She even did my thermoregulatory sweat test and she helped me tie my paper bikini top because I was having trouble. Ha!

I know my cousin notices my face changes when I feel bad. I go from smiling to a distant serious look I think. I guess it is pretty transparent.

Yes Terrier....it's been a real giggle. LOL!

GJenson, was your test a blood test? The article that Loomeymom cited discusses a 24 hr. urine also. I sure hope the hematologist has some valuable input for you. Katybug, yeaaaaw! Don't you think the standard deviation would be built in to the range to begin with? Maybe not, eh? It certainly is a good question and I understand exactly what you are saying about "if I was totally healthy..." If I felt great, I don't think I would care about why I have any of these oddities going on. Of course, the question Why has proven to be a bad road for me to go down in my life anyway. Ie. why did she say that? Why do people abuse animals? Why did he leave me? .......never a good place to set up camp. I'd rather check into Hope Hotel. Ha!

Sounds like Becia has had some experience with this. Maybe a slower drip will help you. I sure hope it does. I know you are struggling right now. Feel better! Prayers.

I know I have begun feeling them again as of a few weeks ago which is when the high humidity hit us here. I also know that I began feeling them (as well as Pac's) last summer and they seemed to get better as the Fall rolled in. I know my Thermoregulatory sweat test showed major inability to sweat so I wonder if heat can throw me off in a cardiac way as well as in alot of other ways. In fact, in the sweat test, it showed "various arrhythmias" while I was in there. Seems to correlate to something anyway.

Thanks Looneymom and Katybug! Let's see...the test said it was a blood test for monoclonal IgM which was elevated. The normal range said 54-354 I believe and my number was 387. But, in reading Looneymom's article, it seems the M Proteins are often found more often in the urine than in the blood. so, I think I will mention this to him on Tuesday. I hope he is a Sherlock Holmes because that is what I need right now. Also Katybug, IMO I feel that the normal ranges start and end at number for a reason. I think I would be inclined to have them recheck at some point to see if yours is still hanging where it is or if it hopefully has gone down. Maybe I am wrong but a double check would put my mind at ease.

Yes! I did that after my tilt table test and I had no idea why and I even sit like that when I eat. I read about that afterward.

Glad you can relate BigSkyfam!

I apologize but I mentioned this before but I couldn't understand what exactly was tested and I was too sick to reply on time. My new rheumatologist tested for rheumatoid arthritis (rf fine) . She ran a panel that tested IgG, IgA and IgM. The A and G were in normal range. The IgM was high. (387). But, at the bottom of the result it said no M Proteins found and she noted no evidence of rheumatoid arthritis. My question is this. Is this something to mention to my new neurologist next week or because there were no M Proteins found, does that mean that it really doesn't mean a hill of beans? I think this is all too complicated for me so I will let the docs do their work but I don't know if I should even point it out as anything significant.

Ok...this is odd but I worry about what to wear to appts. I want to appear nice because I want to be taken seriously. I don't want to appear toooo nice because then they won't believe me when I tell them I feel like dog poo on most days. I want to wear makeup because I don't want too look terrible but then if I wear makeup, I am covering up the dark circles under my eyes and my beautiful pale palor. Anyone get what I am saying? That's why I like videos. It's like...."this is me after trying to dress up to come here and smile because I was taught to smile.....and......This is me on Pots."ha!

Hang in there Sarah! Goodness gracious. It sounds like you are having quite a time there. Glad to hear your spirits are still up. I am glad you sought more assistance. Prayers to you!