... diagnosed 2 ... a ... has ... made ... in ... APS or ... their ... mouth ... think ... Dear Jennifer, There is a wonderful doctor in Montreal with much...
Hello Group, I am Jerry and I am 42y/o Man, married 3 children, 2 dogs, and a partridge in a pare tree. Well, OK, It's actually a Mourning Dove on my patio....
Hey Jerry, sorry to hear of your troubles. It is not easy getting diagnosed. Do you mind me asking what conditions your syndrome consists of? My Brothers have...
Hello, I have a paper that I take with me that has all of my info on it because I can't remember it. This is what I take minus my personal info: SURGERIES ...
Thank you Jerry for sharing your information. I know it must be hard. I really appreciate it. Hopefully it will help my brothers. All the best, Dede Jerry...
Thank you Jerry for sharing your information. I know it must be hard. I really appreciate it. Hopefully it will help my brothers. All the best, Dede Jerry...
I wanted to just clarify - I'm pretty sure that APECED is APS type 1 and that APS type 2 is not APECED. They are two different syndromes that contain...
I wrote my last reply without adding: Regardless of the wording, the syndromes are similar and this is a great support group for all of them ... Moody friends....
Hi everyone! My name is Liz and after almost giving up on finding a group online I found you guys!! My husband as APS1. For him that means Hypoparathyroidism...
Hi Liz, Welcome to the group! We are certainly well represented from one end of the globe to the other. Isn't the internet great!!! Your husband's story...
Hi, Welcome to the group - your husband story is similar to mine also - I was misdiagnosed with epilepsy for two years as a baby until I finally developed...
Thanks for your quick replies Linda and Julia! It's almost surreal to hear of people who have the same issues as James!!! :-) Julia - I will try and get James...
Hi Julia, Just a quick question- When you increase the steroid do you increase the Vit. D and calcium also? Tara's calcium seems to drop when her steoroid is...
Hi Linda Yeah they had me on phenobarbitol for two years as well!! now they know this drug depletes calcium so we had double whammies!! I have never had a...
Dear All, It is so helpful to me to hear others who have the same experience as I. I too was diagnosed with epilepsy at age 9 and took phenobarbital for a year...
I noticed a couple of posts talking about epilepsy. Do you all have some sort of seizures. I ask because my husband, who has had Schmits Syndrome for several...
Hi Cindy, The seizures we are talking about are from either low calcium due to Hypoparathyroidism or low sugar from either diabetes (low sugar from too much...
Schmits Syndrom is a multi-glandular failure. I guess what he has is basically what you are describing. I am just not familiar with the scientific terms. He...
He may have APS Type 2 instead of Type 1. APS Type two involves thyroid, Addison's and diabetes but not parathyroid. Julia. Regardless mutliglandular...
I was misdiagnosed with epilepsy as a child - low calcium can cause seizures, which it seems our doctors didn't realize. I was diagnosed with epilepsy when I...
Hi all, I recently searched for a good review article explaining our disorder - for the purpose of giving to new primary care physicians etc - OB/GYN etc....
Hi Liz, Welcome to our group! My 24yr old son has APS1, which includes inflamed corneas and chronic candiasis (age 4),Autoimmune Hepatitis & HPTH (age 15),...
... thyroid, Addison's and diabetes but not parathyroid. ... help each other with our individual circumstances Hello All, It's Jerry, I know it's been a while...
... has been diagsnosed since the age of 1. She has hypoparathyroid, lack of teeth enamel, anitbodies to ovaries. This January, she was diagnosed with...
Hi Julia, Thanks for posting the journal article. No matter how many times Tara and I explain her illness to her primary care doctors, as recently as two...
Thank you Jerry for that. It really is confusing. Especially when the doctors don't even know. In fact, most of what my husband's endo knows came from us...
Hi Vicki, My daughter has recently been diagnosed with hepatitis, but her doctor is unsure of how to really treat her. We will be sent to the Un. Of...
... Sorry to hear about your daughter's diagnosis of hepatitis. My son has liver enyme blood test done every three months, and liver biopsies done every two...
Thanks for the reply. We will be going to Seattle in three weeks. How high (if you remember were his liver enzymes?) Jessica's have been up and down, but...
Hi Mary, Sorry I can't remember how high his enymes were, but I believe they were mildly elevated for several months, and his doctor then decided to put him on...
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