My daughter has been sick since 2009. She has been to a gastro, but he has reached his limit, and says there's nothing else he can do. He's diagnosed her with Reflux, Delayed Gastric Emptying and a small Hiatal Hernia. But these are her symptoms:
At this point we are desperate for answers. Her doctors are being very dismissive. And this is not in her head. It's so frustrating. If anyone has any insight, I'd really appreciate it.
I've been dealing with very similar symptoms for approximately 7 months now. I feel like I am going to drop dead at any moment. The symptoms are terrifying and very upsetting. I can have them for a few hours to a few weeks at a time. They go away for a couple of days or weeks and then come back for no aparrent reason. I've seen an internal medicine doctor, neurologist, cardiologist and a gastroenterologist. Last week my gastro diagnosed me with candidiasis of the esophagus and atrophic gastritis. He said that the gastritis can onl be caused by two things, H. Pylori or an autoinmune condition. H Pylori test came back negative so now things look like my problem could be inmune system related. I sure feel like there's something wrong with my endocrine system or that I have a functional tumor or something. Needless to say I am very scare. Hope your daughter feels better soon.
The Following User Says Thank You to Mojo37 For This Useful Post: cindyw75 (06-29-2012)
Her gastro did an endoscopy and said everything looks normal. Her biopsies are normal. And at this point he pretty much said she either has an eating disorder (which she doesn't) or we need to see a rheumatologist.
Her symptoms are very much like yours. They might go dormant for a few days, or even weeks at times, but then they come back full throttle. There are times when I cry myself to sleep. So I can imagine how scared you are. I hope you can find some answers. If we find any, I'll let you know.
All my symptoms came back full force yesterday again after a couple of good weeks. I drink tons of sugar free powerade and take Tylenol PM every now and then to get some sleep. I've been tested for a lot of stuff and everything comes back normal. The only thing that came back off the charts was my 24hr urine cortisol levels, low vitamin d and low potassium. At one point I was also anemic but my iron levels and B12 levels were ok so it was very strange. I will also keep you informed. If you look under adrenal boards for "invisible illness, very sick" that is my post. I always update after I see the doctors.
What blood work have they done on your daughter? Thyroid? Antibodies? Has she been checked for anemia? Im feel so sorry for you. I'm going through scary stuff too. Some symptoms are similar to your daughters. How old is she?
They've done a lot of blood work. They've checked her thyroid, TSH, T4, T3. They did the ANA test, came back negative. Anti Smooth Muscle Antibody test, that one came back with a value of 15 (0-19) range is considered normal. Her Creatinine Ser level is low at 4.6 (anything below 5.2 is low). And her Prealbumin is low she's at 19, it should be 20-40 to be normal. They also did an MRI of her brain, it was normal.
She is 16, she's been sick since she was 13. She and I have been asking the doctors to help her. Most of her symptoms affect her gastrointestinal system. But like I said they also cause anxiety, palpitations, and frequent urination. She also has vision blurriness and Rhaynaud's.
Thanks for your response. I hope you get answers soon. And I hope you find some relief some way.
They've done a lot of blood work. They've checked her thyroid, TSH, T4, T3. They did the ANA test, came back negative. Anti Smooth Muscle Antibody test, that one came back with a value of 15 (0-19) range is considered normal. Her Creatinine Ser level is low at 4.6 (anything below 5.2 is low). And her Prealbumin is low she's at 19, it should be 20-40 to be normal. They also did an MRI of her brain, it was normal.
She is 16, she's been sick since she was 13. She and I have been asking the doctors to help her. Most of her symptoms affect her gastrointestinal system. But like I said they also cause anxiety, palpitations, and frequent urination. She also has vision blurriness and Rhaynaud's.
Thanks for your response. I hope you get answers soon. And I hope you find some relief some way.
So sorry! There has to be an answer somewhere. Maybe check for Lyme know you have to get a special test because blood test isn't accurate when it comes to lyme. I've read that numerous times. Just an idea. Maybe its's time to look for unconventional ideas. I feel I've gotten a lot more support seeing a naturopath.
The Following User Says Thank You to Farrah10 For This Useful Post: cindyw75 (07-01-2012)
Her pediatrician is checking for Lyme, Sjogren's, Muscular Dystrophy and Cystic Fibrosis. If those test results come back normal, he wants to re-do the MRI. I'm going to also ask about looking at her adrenal glands. He seems really caring, and like he's open to looking at everything. I'm desperate for an answer at this point. It's so frustrating when they point the finger back at us, like we're the ones doing something wrong.
My daughter has been sick since 2009. She has been to a gastro, but he has reached his limit, and says there's nothing else he can do. He's diagnosed her with Reflux, Delayed Gastric Emptying and a small Hiatal Hernia. But these are her symptoms:
At this point we are desperate for answers. Her doctors are being very dismissive. And this is not in her head. It's so frustrating. If anyone has any insight, I'd really appreciate it.
Thanks!
I'm 40 and having the same problems. Take her to see a nutritionist as I tried probiotics and they worked for 3 weeks until my next monthly
Cycle came along and this is my plan. Your daughter is not making it up. Don't give up on her. Doctors are doing same stuff to me. If they had this, they would be more apt to listen I'm sure.
I wanted to give you an update. My daughter was diagnosed with Postural Orthostatic Tachycardia Syndrome. You can google it and see that this covers almost all of her symptoms.
She had to see a cardiologist who specialized in Dysautonomia. He gave her a tilt table test, and that is how she was diagnosed. She has to take two medications. On day one several of her symptoms went away. She is not urinating as often, she's no longer as thirsty, her chest doesn't hurt any more. Her chest doesn't pound as much.
I wanted to give you an update. My daughter was diagnosed with Postural Orthostatic Tachycardia Syndrome. You can google it and see that this covers almost all of her symptoms.
She had to see a cardiologist who specialized in Dysautonomia. He gave her a tilt table test, and that is how she was diagnosed. She has to take two medications. On day one several of her symptoms went away. She is not urinating as often, she's no longer as thirsty, her chest doesn't hurt any more. Her chest doesn't pound as much.
I hope this is helpful.
Cindy
Glad you have a diagnoses! I've read numerous times that POTS and adrenal fatigue hand go hand. Something to think about
