StephL

Thank you. I'm usually pretty calm about this condition but now and then I just get sick and tired of being sick and tired. Then finding out that some of my blood and urine results are coming back with problems was a kick in the face. I really thought after I got diagnosed we would be able to get this under control and it's not, at all. The meds me way worse and I worry now about MCAD. It's just one of those days where I'm on a pity pot and letting my anxiety get the better of me. My anxiety hasn't been bad at all until a couple days ago.

I just got some urine and blood results back, in the past almost all my lab results have been fine. The doc called yesterday to say my B12 and D was low. I wasn't surprised and I went today for my first monthly shot of B12 and they've got me taking over the counter vitamin D supplements. I also picked up the copy of my lab results, I keep everything I can on hand. Anyway my urinalysis says that I have white blood cells (1+). Is this normal? Am I getting worse? I've been sick for so long now and it scares me that I may be getting worse instead of better.

I had a strange reaction to a tat a couple years ago. I got one on my calf and after a week or so the outline lines on one side became raised and itchy. Over the next few days it moved from one side to the next. Each day you could feel where it has slid over a little bit, until it moved completely to the other side and went away. Every now and then one of my other tats will get raised lines and it will be itchy for a day. Weird.

Here lately, my limbs too have been falling asleep. I wear a girdle too sometimes. My doc suggested it and my theory is that for me, the blood pools more in my abdomen than my legs.

Before I got diagnosed, the cardiologist that I saw was happy to inform me that a pulse in the 40s is NOT low enough to make me feel any different. Now I have a BP machine and a couple of pulse readers, when I'm at my sickest is when I can't get my heart rate out of the 40s. I typically stay in the upper 40s to lower 50s but when it starts getting below 45, I am miserable. I agree with the sentiment of you taking charge. It was the only way I was diagnosed and since then I've gotten sicker instead of better so I know it's time for me to step up and figure out what is going on again. What I am doing is making a list of tests I want done with links to why I want these tests performed, and taking all that to my doc. No one in my area, that I can find anyway, knows about dysautonomia so my family doc has agreed to learn about it along side me. That makes him pretty accomadating to my needs.

The ttt indicated NMS. I'm not 100% confident in that though. I seem to have a lot of problems throughout my whole system, from pupils to urination. The worse by far is the constant nausea. I'm down 40 pounds since November because I just can't bring myself to eat sometimes. And no, we live in Florida. I've lived here all my life but he moved here when he was 11 or 12. He was born in Holyoke but lived in Easthampton. His family, is still all up in that area so we visit from time to time.

Hiya Westernmass, I'm somewhat new and not very active here but I had to chime in and say that I have similar numbers except my heart rate stays in the 40s often, rarely ever above 60 unless I'm standing and then its all over the place. Just doing a few dishes will get my pulse up to the 140s. I'm so confused by all this, I thought it would be easier once I got a diagnosis, not harder. If you don't mind me asking, do you have other symptoms? Also, my hubby is from the Springfield area, nice to meet another westerner!

Thank you so much for posting this thread. I not only got the app and love it but found a couple of others. I got a diary for my blood pressure/pulse/weight. It charts it all out for me and it really helps to actually see the differences in systolic and pulse. I can even send it to email so I can show the doctor. I'm like a kid doing the poor mans TTT now. I want to go around and test everyone now. LOL

My doc has me on 3 to 4 grams a day. I was a little worried about that but 10? That is crazy. I would be leery too.

Not to hijack the thread but its sorta on topic... Does anyone else ever feel that feeling like when a plane takes off, when they are fatigued? Or any other time for that matter? Do you know what I mean, like a pressure or an invisible force pushing down on you.

I'm just beginning my journey, or at least its the beginning of knowing what I have. I've been sick off and on for years. Anywho, I too and grateful for the salt. I love salt and craved it my whole life but have been told how bad it was so I went easy on it. I also think that the diagnosis has helped my relationship. Not that things were bad or anything but husband would get very frustrated with me when I didn't feel up to doing things or was complaining about not feeling good. Now he gets it and he may still get aggravated but its temporary and he deals with it so much better. Funny thing, I took my mom with me for my first appointment with Dr. Thompson because my husband couldn't take the time off work. He did a lot of independent research and that is when he realized how sick I was and started changing. But, when he went to the appointment with me yesterday, he looked like I did after I left the first time. He was smiling, he even paid the bill and was happy about it. My husband cringes at spending money but he said he would pay anything to see me with a competent doctor. It was like the weight wasn't just lifted off my shoulders, but his too. Sorry, I kind of went off in another direction there.

I can do all those things also but it doesn't happen all the time. Mostly stepping off of elevators can mess with me. I do feel that pressure, acutely when an elevator moves. I seem to be sensitive to pressure changes around me. I've lived my life in Florida and as a teenager I can remember saying that there must be a hurricane brewing because I could feel it. I still can.

The only thing I have for you is to keep fighting for yourself. Its the only thing that worked for me. Try researching doctors in that field and see if you can find one that has a good rep?

Thank you for sharing your news. I'm trying my best to keep a positive attitude through all this and usually I am pretty upbeat but lately its been rough to stay so cheery. Its nice to hear how others get through.

I don't know anything about this but wanted to chime in to tell you that I hope it all works out fine and is something minor.

NMS it is. I'm starting to get over my excited of having definitive test results and realizing what this all means. I've spent months researching that it never occurred to me that at some point I would have to deal with actually having a chronic condition. Mostly I'm nervous about my job because I love it but it is high stress at times and I'm always on my feet. I work for the airlines. I'm not protected by FMLA because I don't meet the minimum hours required to be eligible.Oh well, I'll take it as it comes and try to bask in the glory of finally knowing, for sure, what is going on with my body. Also, I'm fantasizing about writing letters to a few doctors and telling them just what I think about them.

Thanks again everyone. Its nice to have a place to go where people get it. The test went well and the two ladies running it said there is no doubt that I have dysautonomia. They commented that my blood pressure was all over the place. There's no rhyme or reason to it. I see the doctor tomorrow so we'll see what he says.

Thank you everyone. I just want this over. I think I get myself worked up because I have been treated so poorly by doctors in the past. I know that Dr. Thompson is the right doctor and he is getting this test done properly, it's just nerve wracking. I'm getting rather grouchy right now too because I'm thirsty and can't drink anything. I can deal with not eating but I can't stand to be thirsty. I'll be leaving soon and maybe I'll have some news to report when I get back.

Thank you. I figured many of you could relate to this feeling. Dead ends have plagued so many of us.

Yup, its in a few hours and I'm so worried. I'm not scared of the test itself, I'm scared of the results. I've had every test I can think of over the years and they always come back fine, I'm so darned nervous that it will show nothing is wrong despite the fact that I have no doubt of what is going on with me and neither does Dr. Thompson. To top it off I thought I forgot to pack my klonipin for the trip and couldn't sleep all night. Then I wake up this morning and see it.

I don't have a bleeding disorder per say but I've had a couple of strange things happen and I wonder if its related to dysautonomia. 20 years ago I almost died during childbirth. After 2 days of bad labor pains it was determined that I needed a c-section. They had to put me under because I wouldn't numb up on the upper half of my body after the epidural for some reason. When I awoke I found out that I after 2 1/2 blood transfusions and numerous medications, they had to do a hysterectomy because I wouldn't stop bleeding. It took me well over a decade to get over it. I always wanted more than one child and I felt like my womanhood was taken away from me. I'm over it and grateful for it now. I think my life is better the way it is now. Its strange to me that I keep chewing on this now that I've been diagnosed. If I'm really over it, why does it sit here bothering at me? It doesn't upset me or anything but I just keep wondering if I almost died because my blood was sitting there and not moving on like its suppose to. It doesn't matter to so much if that is what happened, I'm more curious. One other time I was having laproscopic surgery and when the doc pulled the scope out of my abdomen they nicked a vein that wasn't suppose to be located where it was and it started bleeding. Again they had issues with stopping the bleeding and in order to repair it they had to cut me open further to sew it up. That caused more adhesions, which I have a very bad problem with. Has anyone else heard of anything similar to this? Do I sound crazy for linking these two together?

I know a lot of us suffer with nausea and spasms but I'll bring up a personal topic that I'm sure we don't really want to discuss. When I first started having problems this time, it started with my GI. I noticed that my stool was almost always soft for a couple of months before making an appointment with the doc. In that time it started becoming yellow to clay colored. Now my stools are always that color and almost always soft. I've been through so many stomach exams and everything appears fine. My GI doc told me the color is from it moving through my system to fast and didn't seemed concerned about it. Now I'm thinking that my GI system must be in hyper mode and that is why everything is moving too quickly. Same with my urinary system. The strange thing, to me anyway, is that my blood pressure and pulse seem to be on hypo mode. If you suffer from more than nausea and spasms, what are your GI problems? Anyone out there like me?

Makes me want to get sick to find out. The only thing that I have found so far that gave me relief was a blood draw. It was really weird but for 3 days after I felt the best I have in close to a year. I thought I had hemochromatosis but that wasn't it. I have noticed that I almost never get sick anymore. I've even drank after my daughter when she was sick and didn't get anything. I'll get very minor colds when my family is wiped out, or nothing at all.

Something I've noticed just the past few days for me and heat intolerance is that it seems like my body has a hard time adjusting. I've turned the AC on finally and when I go outside I get really sick. Before that though the house was open 24/7 and I was still sick but I didn't get those flushes of GI problems as often. I live in Florida, this is going to be a real problem for me because everything is air conditioned and it's hotter than blazes outside. I'm glad the doc discussed getting me a handicap sticker for parking. Especially since I have to wait for an employee bus at my job. The spaces are right next to the bus stop so I can stay in my car until I see the bus coming.

I can get pretty hyped up when I have to see a doctor, especially a new one. For me, there is little doubt I'm having an actual anxiety attack from appointments. Its different than when I'm having anxiety from dysautonomia. Its a real catch 22. I get all anxious and wired up and then when the doctor sees me that is all they see and they say I need to be on antidepressants for my anxiety. Or they use to anyway, I've gotten much better about choosing doctors lately. I once had an elderly doctor, who after being emotionally abusive, then proceeded to touch my bare thighs with no nurse in the room, then told me that I was way too high strung and clearly needed medication for it. No you idiot, I need to run as fast I can away from you. I called my husband that in tears and told him what happened, he was ready to get in the car and beat this guy up.