songcanary

I haven't been tested for gastroparesis, but I did have a small bowel follow through which was negative. I realize that doxepin doesn't work for everyone, but it really helped me. My nausea was so bad for three years that I lost weight to the point that I was afraid I would die before I got diagnosed. And I'm not kidding. I recently tried to taper off and within 12 days my nausea was so bad that I had to resume it. Symptoms were gone immediately.

GI symptoms for me are very debilitating; I understand what this must be like for your daughter. I hope that you find the right meds and treatments to help her. Many of us on this site (including me) have had symptoms since childhood. Thank goodness your daughter was diagnosed fairly quickly. I wish I could have had a mom like you. Best wishes.

I went through this. I lost half my hair before I finally got a sympathetic doctor to take me seriously. At the time my TSH was 1.5 but my FT3 and FT4 were both low normal. But I had all the classic symptoms of hypo; the fatigue, the chills, the cold hands and feet, dry skin, peeling nails, low body temp, in addition to the hair loss. It was my allergist of all people, who tried me on a trial of Armour and it was like a miracle.

I don't know about your low TSH, I'm no expert. Perhaps an integrative doctor could be of more help to you. Endos are notoriously blind when it comes to problems that aren't outright killing us.

Also, ferritin deficiency will cause hair loss (I had that too) at any level less than 70. Wilma Bergfeld from the CC told me that personally. She is the head dermatology researcher and she said the lab ranges need to be raised for women.

I know exactly how you feel; the last thing we need is a kick in the pants like baldness! I wore a pixie for over a year because of it. I hope you can figure out the cause, maybe something easy like meds, you never know?

I went to a movie theater recently for the first time in two years and the same thing happened to me. I had to look down frequently to avoid feeling sick. I got used to it after awhile and felt better after about half an hour.

I am the same as Bren. And for me, keeping my emotions in check is THE most difficult thing. I don't respond well to curve balls. Lots of room for improvement there LOL.

Puppylove,

I don't know what meds you are on, but I had the same symptoms until I started doxepin. Plus, I was on PPIs until recently but have been able to stop them after starting digestive enzymes. They seem to help. I so feel your pain. I've gone the phenergan route too, and it was hit or miss, plus I hated being sedated. I'm sorry, I can't answer your actual question because I've never been tested for gastroparesis. I just wanted to support you. I do hope your doc can suggest something else, but I'm not sure if the GIs think of much else besides the usual meds. (((hugs))) Hopefully someone else will post with good suggestions, I sorry I'm not much help right now .

I have four freshwater tanks and I love them except for cleaning day! Three cichlids each have their own tanks and then there's my betta; he has a huge brandy snifter. We have really hard well water and cichlids love that. I use softenened water for the betta.

During the few years that I was starting to have symptoms, I was working out doing Jazzercise which is aerobic and strength. But I also had enormous stress at the time and I think that's what took me down. However, after diagnosis I started yoga primarily for my fibro and what an awakening; I had no idea how hard it is. I am sooooo much stronger now, especially in my legs. It has helped the dysautonomia too, which I did not expect. I really think this article explains why I feel better with regards to the exercise type. Thanks for posting this, it was very interesting.

For me, that's exactly the way it came across. I think you are quite talented. Plus, with your crazy humor, when you get better I think you are always going to be the 'fun mom'. That's one lucky baby you have there!

I have never noticed that my reflux symptoms change when I'm worse. They seem to be the same no matter what. I keep trying to stop Prilosec but so far I only get to about two weeks and then it gets worse. Right now I'm trying again, so far it's been three days. I can feel my stomach contents go up when I bend over-ugh.

Claire, you are killing me here with your humor! I have seen this three times now and laugh more each time. Thank you!

I voted rheumatologist because he was the one who initially took my history seriously and got me on doxepin and scheduled a TTT. But now I am treated by my EP who added Florinef. I give my rheumy credit though, because he's the one who got the ball rolling.

Hi Marlene,

Was just thinking of you tonight. I am glad you are able to maintain your diet and hopefully now you can find out what the heck happened. Best wishes on your testing.

I've been sensitive my whole life so I wonder if it's inherited. Both my parents had some of their own. But what causes the first person to be sensitive? It's a good question and I would LOVE to know the answer.

Marlene,

I am wracking my brain trying to think of something, I normally am constipated so have more experience there lol. So Lomotil isn't working? Calcium constipates me, could you take some of that? Iron does too, maybe some of that temporarily. I wish I had better answers, I'll keep thinking. I'm so sorry you are dealing with this.

The best advice I got was from my allergist's nurse. She once told me 'A person can be allergic to ANYTHING'. This was when I was still trying to figure out my food allergies and I was reacting to most foods, including yes, rice and lamb. I am still trying to understand why and I really think my immune system is bonkers even though my labs don't indicate that.

I try never to assume that I can't be allergic to something because I've been proved wrong many times! It is a very frustrating malady.

I tested positive for past exposure, but my doctor said that many people do. It's not uncommon.

LOL I used to be a medical transcriptionist so I can imagine we were probably going the same kind of nuts, only on different days!!!

Are you currently taking any meds and who prescribed those? If so, there is at least ONE person out there who doesn't think you're crazy. And all of us, of course . I agree that the chicken peck typing is bad. I have had two doctors at the Clinic who did this. Must be something in the water up there.

Yeah, I know what you mean. The wheels turn pretty slowly up there. I am lucky that I am in Akron so the drive isn't so far. Try to give her a chance. My initial visit was pretty much like yours. The second was much better. I had my TTT interpreted while I was there so hopefully you'll get some answers Friday. Hang in there!

I have rosacea too. I used to have pustules but they went down after I got treatment. Before that, they were really bad; I was embarassed to be seen. I don't really remember them being painful to the touch, but it's been a long time so maybe they were. I use Metrocream twice a day for it. But I still have breakthrough flushing sometimes and I can't always identify a trigger. I never thought about it being related to dysautonomia but it wouldn't surprise me; everything else is messed up!

Jen,

My friend's mother just had a procedure done where they placed a temporary pump to empty the bladder. She had already been catheterizing herself. He told her if it worked within a week, he would place the device permanently. Unfortunately in her case, it did not work. But I just wondered if maybe it was anything your doctor has mentioned?

I really feel for you. Bladder problems are just awful. Been there.

Gutsy article. I really like this guy!

Yes, actually finding the sulfite allergy was just the beginning of what has turned out to be multiple food allergies. I used to drink wine and had horrible UTIs afterwards so that's how I finally figured it out, after a google marathon of course. Sulfites and I don't get along AT ALL!

Dr. Fouad is very nice but in my experience, she likes concise questions and a very accurate medical history. Most likely she will be the one asking the questions. But if you let her do that and then choose your follow up questions wisely, she can be very insightful. She has been very kind to me and has me on a treatment plan that is working. I hope your appointment goes well and that you get some answers!

Yes Corina, positive reinforcement works wonders. I just wish I could convince my Shiba Inu of that. BTW that's not him in the pix, that's Mini Me the mix, who of course is perfect in every way LOL!

Nice of you to post this.