Hi Wondering if anyone has been diagnosed with autoimmune fatigue and/or chronic fatigue? I was diagnosed at Mayo Clinic. I wish there was more research into both of these…
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@abrown2 Have you had a complete genetic scan completed on your son? They are getting into the do-able range for most folks now, thanks to Medicare and advanced technology. Dante Laboratories and Sequencing.com are a couple of good places. I have gone through many of the symptoms and procedures, and now I know almost my entire blood kin as wild type myeloma. Mine has ended up with some pretty serious stuff which every doctor except my birth doctor denied I could have. Get that whole genome done. It may save his life from disability and early death.
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Thank you. That is very interesting. He had one genetic test run through our integrative Dr. I forget now what he was looking for, but the test really did not show anything of substance.
The geneticist at the children's hospital we work with is very good. Very thorough and clear. He is not seeing a reason to run a test yet. I guess not knowing what to look for can be challenging. I think it would a good idea, but I am not geneticist.
@brown2 – I do personally know how upset you must be.
I have a son, who went through something similar twice and as a result lost of school in 6th and 10th grade.
In 6th grade he developed the extreme fatigue and dizziness/ vertigo. No final diagnosis made. He got better after what seemed like an eternity and could go back to school.
In 10th grade it started with collapsing in school. Total exhaustion probably. He was seen by a Pediatric Neurologist at our University hospital. Many tests done- normal. His gait was that of an old man. She diagnosed him with most likely Fibromyalgia, also because his older sister had been diagnosed with it.
Missed lots of school.
He eventually was referred a Pediatric Rheumatology program for children and young adults to help them manage the effects Fibromyalgia had on them. That really helped, especially learning how to get normal sleep again. With more sleep, symptoms improved.
Regarding your son’s GI issues, was he tested for Celiac disease?
Fibromyalgia often is found together with other autoimmune diseases.
Thank you so much for contributing. He has been tested for Celiac and seen by Rheumatology and just about every other specialty at Children's. all tests come out in the "normal" range, but he is not "normal." He did not make it to the 8 min. mark on his tilt table test without passing out, but even that did not lead anyone to anything such as a diagnoses or anything to help. he doesn't have the classic pain often associated with Fibromyalgia, but the exhaustion is relentless. I just thought they would test him and find some weird syndrome with a name I had never heard of and figure out a way to help him feel better. That is not the case. It is like some weird medical mystery. Hopefully we will get somewhere one of these days. I appreciate your help : )
@zbrown2 I, also, went through some simple non-genetics analysis, and came up with nothing. now I learn I have been fighting a bucket-full of diseases and disorders from the day of my conception. Please, contact Ambry Genetics (www.ambrygen.com) and have them run one of their tests. When I did this, it saved my own bacon by giving me some clues. They are great people. The fact that your son is having trouble, and the doctor has not found the problem, tells me that it is time to get serious about his life. I would have lost mine by now if I had not started pushing. karl
Hi Mom. Can’t imagine what you are enduring. I know this is a little controversial in traditional medicine but has he tested for mold illness/ CIRS Could there be any mold in your house? I just wanted to pass that along I had mold in my house and I’ve had quite a health journey that included significant G.I. symptoms good luck to you and your son
Yes, thank you. His integrative Dr. thought this was the issue. we did all the protocols, diet, etc…had our house tested and tore our basement apart sort of hoping to find mold and that would lead to answers. No mold in house and no diet, meds, etc. helped. We got a new furnace and air exchanger on the house…nothing has helped. Just had a second house test done by a guy who's background is micro biology and immunology. He too did not find anything. Although he could not officially diagnose anything, he is thinking it is a hyper sensitivity to a bacteria within mold or dust. Once his immune system is triggered it goes into overdrive and a inflamation response. This all makes sense, but still leaves the what next and how do we help our kid if this really is the issue. I am no Dr., but when I put puzzle pieces together, this is the type of thing I keep thinking it might be. Who knows?
Thank you so much.. I wrote the name down and will look into it. I am constantly trying to figure out what is going on with our son. I ask questions and advocate for him. I really want him to have as normal a life as possible. This was not his existence two years ago. Now he is being pulled from summer camp and teams and anything else he once was able to do. Not a great way to be 16. I sure appreciate the help from this mayo site for sure. You never now what suggestion will help open a door.
Take about ok at LDN …I have AI that LDN put into remission for eight years…Mold was the cause..it was behind the wallpaper….went through the whole doc bag and allergic to all of it
I was diagnosed in the ‘80s.. The problem was the chemicals coming out of new carpet, kitchen cabinets & unfiltered water.. I can not eat frozen prepared food, only organic made from scratch.. Filter water with a Pure filter & rotate food that are consumed..
Hello @dianegerrodette, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thanks for sharing that tip. It is an often overlooked cause of chronic fatigue syndrome and multiple chemical sensitivity. Here is an older article from 2007 on the topic.
Functioning in individuals with chronic fatigue syndrome: increased impairment with co-occurring multiple chemical sensitivity and fibromyalgia: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1890280/
Are you able to share a little more about your diagnosis and how you discovered the cause?
I need to think about my response because my process was complicated.. Need to make my computer/iPad operational.. Easier to respond… Thank you so much for your inquiry & I will write you next week.. Diane Gerrodette
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