micheller

I just had it last week. Easy test for me. The first part didn't hurt at all. The second part was somewhat uncomfortable because my neuro kept moving the needles around in circles when it was in my leg and arm. I didn't have any after effects.

I don't think I've been tested for mast cell. Is it a blood test? I used to go tanning but the first few times I would get a prickly rash on my legs that looked like broken blood vessels and felt like someone was poking me with needles. I get a really blotchy, itchy but painful type rash when I go in natural sun. I can't tolerate heat either and I failed the sweat test.

Thanks for the replies! My fiance says I'm crazy. HAHA Yeah I kind of am. I didn't know there was an 'at home' test for it. Interesting. I wonder what's causing it.

Does anyone else have a sun allergy?? I was out in the sun for about a half hour today reading and my leg that was facing the sun feels like it's sunburnt and is rashy. I also broke out on my hands and along my jaw line. This has happened before but never connected the two.

My pots symptoms started with my 3rd pregnancy. I've read people say their symptoms improved with pregnancy because of increase blood volume. Mine, however, was horrible. Not to scare you, everyone is different. I was couch bound for almost the whole 9 months. My symptoms were awful for about a year and half after delivery until they started to decrease. I had a c-section with my last 2 but it was because a different issue not related to pots. I was induced with my 1st.

I had my EMG today. It was easy but my calf is tender where she poked me. She said my results weren't normal but not horribly bad. I had blood tests taken in Feb, my iron levels are extremely low (a 7, 50 is normal) and my vitamin d is low. I have to start supplements and get my iron and blood count levels checked in 2 weeks. If they aren't normal, I have to get an iron infusion. Lovely. She also wants to do a muscle biopsy. She thinks that because my reults weren't good, that the muscles and nerves in my digestive tract are not functioning correctly and that could be why my vitamin levels are so low and be causing the nausea and constipation issues. Iron supplements are constipating so I have to be careful with those. She said my low iron could be causing some of my fatigue and wooziness. I completely forgot to ask her about my swelling. It used to be just in my legs but my hands have been swelling too. I haven't been salt loading because that makes it worse as does too many fluids. So I'm kind of at a loss there.

I won't touch Prozac ever again! I took it for about 3 weeks and my symptoms were awful. Besides the pots symptoms, it made be into a crazy, emotional, ****** (sorry) mess. I felt like I wanted to jump out of my skin at everything. They say it can take weeks before it starts kicking in and in some people the side effects start decreasing then. I couldn't continue but if you feel you need to stop, then I would.

Do you notice it decreases when you're sick with a cold or flu? I have this head/sinus cold and I don't have nausea which is my worst symptom. My head issues, dizziness, foggy, are worse but no nausea? I also notice it decreases after a surgery for a few days. I wonder if there's some kind of connection.

Jen thank you for the reply! I'm sorry you're stuck in bed, that has to be rough. I did apply for SSI before I had a diagnosis and was denied. I'm still in the testing phase so I think I would get denied again until the severity is in my records. My fiance makes quite a bit for around here but we have 3 kids also. He makes just above the income limit for state assistance as far as food stamps and housing goes.

You're welcome!! I know what you mean. I took Children's Tylenol after my surgeries because I'd get side effect from regular strength. I have yet to try my Midodrine for this reason.

I found out another member on this board lives 10 minutes from me. Ha! That's is interesting. My nausea is my worst symptom. I'll have to check into that.

Bren, I took Reglan before I was prescribed Domperidone. I had awful side effects from Reglan. I usually get the 'rare' side effects but I had none with Dom. I have a very slow intestinal tract, like completely non functioning, and this helps keep things moving. Lenna, the FDA recently stopped the compounding pharmacy here from making it. It wouldn't surprise me if they do that at all the pharmacies. It's a shame they don't approve it.

I was having this problem too. I was ordering it from a local compounding pharmacy but the FDA stopped them from making it. Then I was ordering it from Canada but the last time I went to reorder, it said they can't ship it to the states. I was really disappointed because they had the dissolving tablets which were great when I wasn't home. I now order it from New Zealand which is a little more expensive but I get my meds. I understand why insurance won't cover it but if it really helps people, I don't get why the FDA won't approve it.

For those of you who can't get disability but don't work, what do you do for money? We ended up moving in with my fiance's parents which is 8 people in a 3 bedroom, 1 bath house. Plus 5 dogs. Ugh We can't afford to move out with just his income, we did live on just his for about 7 years but have a truck payment now. I'm looking for things I can do from home. I started selling Scentsy but my parties are low. I'm hoping to boost that up soon. So I'm curious what everyone else does.

I have them on 5 of my finger nails. Funny because I brought it up to my fiance today. I didn't know they had a name either!

Christy, I'll have to ask about them when I go next week. I'd love to see someone a little more specialized.

I go to Froedtert which is part of the Medical College of Milwaukee. They have great doctors! My neurologist said during my last appt that they were getting in a few new specialists that deal with pots and they have a new support group.

I've had the motility test which came out normal. I was prescribed domperidone for the nausea which somewhat helps but I can't get it in the states. I used to order it from Canada but they can't ship it to the states anymore. I found a site I can get it from New Zealand but it's so expensive. I have a few left that I use as a last resort. I was just thinking that if the nerves aren't working correctly, if there's a shock therapy type thing to jump start them, pulling at straws maybe. I've tried every med and diet possible with no help. I know a lot of people suffer with GI issues

I've always had intestinal issues since birth. Spend my first 2 years at Children's Hospital to figure it out. No diagnosis came from it. It got so severe that I ended up having a colostomy 6 years ago. I gained a ton of weight (almost 50 lbs in 3 months) but didn't really have any problems, felt great. Then 3 years ago I got pregnant with my daughter (3rd child) my problems increased horribly. I barely ate my pregnancy, that's when my pots really kicked in. I slept 90% of my pregnancy, barely got off the couch, had to have someone come take care of my boys because I just couldn't do it. I had severe reflux, ended up having the nissen in 2009, that didn't work so had a redo 5 months later. The redo didn't work so had another redo in Dec 2010. My GI did a scope and said my wrap is twisted, herniated, and broken down. So something isn't working right. My whole digestive tract is so malfunctioning I can barely eat, constantly nauseous, my intestines just don't work. My neurologist thinks it's all from the pots. While I know pots can disrupt every body function but I don't know why it affects the digestive tract so severely. And what kind of treatment there is if it's the nerves misfiring. Any input would be great!

Yes it makes my vision blurry. My vision is weird anyway. I can see fine, blink and it's blurry, blink again and it's fine. Also if I look closely in the mirror, my eyes have the 'oil in water' effect look. I'm not sure what that's from.

She prescribed me 5mg. Is that a high or low dose? I'll start with a quarter tablet. She said to increase the dosage every week until I feel results.

I was prescribed Midodrine about 2 months ago. I have yet to take it. I have a huge fear of taking new meds but I want to start taking it. I know many of you take something for gerd. I take Omeprazole first thing in the morning. Do you space the two out or take them together?

Mine are like that too. Mine also get really dilated, it's scary looking. When I first seen my GI, he did the light test to see if my pupils constricted with light and they didn't. I'm guessing that's why I have bad light sensitivity? My neuro hasn't said anything about uneven pupils though.

I get like this too and it takes a while for my body to calm down after. I have to time my eating/driving. I can't eat within 3 hours before I drive/ride or my nausea is awful. I found that it's not as severe if I'm driving, I'm more focused on driving but it's horrible if I'm a passenger. The hour and a half drive to my specialists are torture. It reminds me of the movie Dr. Dolittle where the dog is in the front seat saying 'line, line, line'. Lol I also have a hard time with sensory overload while driving. Too much going on at once.

That's great! I just signed up at a gym but I'm afraid to go. I lost a lot of muscle being inactive for 3 years and I wanted to tone up but any exercise (even going up and down the stairs for laundry) makes my heart rate shoot up and I get all shaky. I'd love to run but don't think I'd make it to the end of the driveway.