1. < Autoimmune Diseases

Unexplained illness

Posted by jackic @jackic, Jun 7, 2018

Hello, I am at my wit's end and hoping this "thing" as we call it may ring a bell with someone who can help me. My 15 1/2 year old son has had this reoccurring illness for the past 2 1/2 years. We have had many many blood tests and nothing can be found. He will be totally fine, then either at night or when he wakes up in the morning , he is exhausted, very fatigued, will develop a headache, some joint pain, not as hungry but does eat and some digestional issues. Hard to concentrate. Basically lies on couch and watches tv. This thing lasts 4 to 5 days and after that he feels totally normal again. He is a kid who is home every day after school. He is not overtired. It is different. Its not Lyme, mono, blood counts are good etc. We are currently working with a pediatric rhumotologist at a very good hospital. Sometimes it has occurred every 3 to 6 months. This past year he has been sick 5 times since September. There seems to be no rhyme nor reason when he gets sick. Has anyone experienced anything similar?? Thank you.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

oldkarl | @oldkarl | Jun 12, 2018

@jackic Hi, friend. This sounds familiar... lots of tests, no answers, etc. etc. Anyway, even at his age it is possible to suggest some possibilities. First, has he had a sleep study? Sleep Apnea? At that age I was sleeping less than an hour per night. Second, tests such as ANA, BUN, Ribosomal P Protein, sFLC would seem in order. The sFLC is usually thought of for much older folks, but a relative of mine would have flunked it at age 15. Good image work of lungs, heart, kidneys, thyroid, brain, etc., might pick up deposits of mis-folded proteins in the cerebrum, as mine did. Eyes Checked? Have you kept all his testing paperwork? Get it all together, and the two of you go over every note or comment, and make sure that everything the doctor said or questioned is noted. Lots of things get sort of tossed out into the air, and never make it to a dX assessment because the doc forgets or questions her or his own judgment. I have found, after 70 years of this, that the most valuable part of my memory has been the lab and consult papers we have kept. Now I have written them up, and made my own notes to help me and the docs think this thing through. You can see the result at https://bit.Ly/1w7j4j8 under "Amyloidosis Dossier". I would suggest you and your son do your own systematic study to try to come up with something. And keep trying. It has taken me 70 years to understand my dilemma.

REPLY
1 reply
barefoothorseman | @barefoothorseman | Jun 13, 2018

I'd try removing all grains sugar and processed foods. Consult a functional doctor sounds very much like internal parasites or bad bacteria

REPLY
brenb | @brenb | Jun 13, 2018
In reply to @johnbishop "Hello @jackic -- welcome to Connect. I’m sorry to hear you are having a difficult time..." + (show)
@johnbishop

Hello @jackic -- welcome to Connect. I’m sorry to hear you are having a difficult time getting a diagnosis. Connect is a good place to share your health concerns and learn what other Connect members with similar health concerns are doing for treatments. There is currently another discussion for undiagnosed autoimmune diseases that may be helpful to read through here:
— https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/bookmark/?ajax_hook=action&_wpnonce=8933e3d2d7.

Also, I would like to invite other Connect members who have posted about undiagnosed autoimmune diseases to see if they have any suggestions. @lisabeans, @cmtg, @pinkmk, @aman_23_23, @mommaj, @tljam, @whitechinacat, @palscoreen, @terryblink, @pinkstar, @rebo, @v1crew, @jewel8888, @tbeckys, @WendyAnne, @559purplepatty, @atorset, @beff2468, @taterjoy do you have any suggestions you can offer @jackic?

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.
Mayo Clinic Tours – YouTube Videos: http://bit.ly/2o3jvMj

I thought this video maybe helpful to let you know you are not alone

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.

-- https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

John

Jump to this post

Hi @johnbishop - thanks for the information. My parent is coping with an undiagnosed autoimmune disease and has visited Mayo clinics 2x within the last 3mos now. Unfortunately, it seems that they only receive information through "the portal" and the specialty doctor is unavailable to have phone conversations (my parent lives in a remote part of the country & Dr. is in FL). Is this typically the case, or can I help them talk directly with the doctor? I believe navigating the "portal" is a difficult challenge for an aging generation and I know talking directly with the doctor after diagnosis would help tremendously.

REPLY
tinkerbell | @tinkerbell | Jun 13, 2018
In reply to @johnbishop "Hello @jackic -- welcome to Connect. I’m sorry to hear you are having a difficult time..." + (show)
@johnbishop

Hello @jackic -- welcome to Connect. I’m sorry to hear you are having a difficult time getting a diagnosis. Connect is a good place to share your health concerns and learn what other Connect members with similar health concerns are doing for treatments. There is currently another discussion for undiagnosed autoimmune diseases that may be helpful to read through here:
— https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/bookmark/?ajax_hook=action&_wpnonce=8933e3d2d7.

Also, I would like to invite other Connect members who have posted about undiagnosed autoimmune diseases to see if they have any suggestions. @lisabeans, @cmtg, @pinkmk, @aman_23_23, @mommaj, @tljam, @whitechinacat, @palscoreen, @terryblink, @pinkstar, @rebo, @v1crew, @jewel8888, @tbeckys, @WendyAnne, @559purplepatty, @atorset, @beff2468, @taterjoy do you have any suggestions you can offer @jackic?

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.
Mayo Clinic Tours – YouTube Videos: http://bit.ly/2o3jvMj

I thought this video maybe helpful to let you know you are not alone

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.

-- https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

John

Jump to this post

@brenb - I recently had a test at Mayo Clinic in Jacksonville and wanted to talk to the doctor about the results. I sent the doctor a message on the portal and asked the doctor to call me and gave my home phone number. The doctor called me that afternoon and went over all the results with me. You may want to have someone help them set up the portal. All of the reports on each visit are in the portal as well as results of all testing. Also, any resulting diagnosis will be in the reports. They can also ask that the doctor call them directly as I did. I was diagnosed with breast cancer 5 years ago and had given the doctor the okay to call me with the diagnosis. This was done over the phone. Another suggestion would be for you to call the department that has diagnosed your parent and ask that the doctor call your parent. I have found that the doctors will call but you will not be given the doctor’s phone number. Just talk to the secretary or the doctor’s nurse. Good Luck!

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jun 14, 2018
In reply to @johnbishop "Hello @jackic -- welcome to Connect. I’m sorry to hear you are having a difficult time..." + (show)
@johnbishop

Hello @jackic -- welcome to Connect. I’m sorry to hear you are having a difficult time getting a diagnosis. Connect is a good place to share your health concerns and learn what other Connect members with similar health concerns are doing for treatments. There is currently another discussion for undiagnosed autoimmune diseases that may be helpful to read through here:
— https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/bookmark/?ajax_hook=action&_wpnonce=8933e3d2d7.

Also, I would like to invite other Connect members who have posted about undiagnosed autoimmune diseases to see if they have any suggestions. @lisabeans, @cmtg, @pinkmk, @aman_23_23, @mommaj, @tljam, @whitechinacat, @palscoreen, @terryblink, @pinkstar, @rebo, @v1crew, @jewel8888, @tbeckys, @WendyAnne, @559purplepatty, @atorset, @beff2468, @taterjoy do you have any suggestions you can offer @jackic?

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.
Mayo Clinic Tours – YouTube Videos: http://bit.ly/2o3jvMj

I thought this video maybe helpful to let you know you are not alone

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.

-- https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

John

Jump to this post

Hi @brenb -- managing communications online can be challenging for some older folks in my generation (I'm 75). I don't have an answer for your question but I'm tagging our Director Colleen Young @colleenyoung to see if there is an alternative means of communication that you can use to help your parent.

May I ask if are able to use the patient portal for them? I believe this may be a way if they can authorize you to log in for them. That way you are able to send a message to their care team.

John

REPLY
jackic | @jackic | Jun 15, 2018
In reply to @oldkarl "@jackic Hi, friend. This sounds familiar... lots of tests, no answers, etc. etc. Anyway, even at..." + (show)
@oldkarl

@jackic Hi, friend. This sounds familiar... lots of tests, no answers, etc. etc. Anyway, even at his age it is possible to suggest some possibilities. First, has he had a sleep study? Sleep Apnea? At that age I was sleeping less than an hour per night. Second, tests such as ANA, BUN, Ribosomal P Protein, sFLC would seem in order. The sFLC is usually thought of for much older folks, but a relative of mine would have flunked it at age 15. Good image work of lungs, heart, kidneys, thyroid, brain, etc., might pick up deposits of mis-folded proteins in the cerebrum, as mine did. Eyes Checked? Have you kept all his testing paperwork? Get it all together, and the two of you go over every note or comment, and make sure that everything the doctor said or questioned is noted. Lots of things get sort of tossed out into the air, and never make it to a dX assessment because the doc forgets or questions her or his own judgment. I have found, after 70 years of this, that the most valuable part of my memory has been the lab and consult papers we have kept. Now I have written them up, and made my own notes to help me and the docs think this thing through. You can see the result at https://bit.Ly/1w7j4j8 under "Amyloidosis Dossier". I would suggest you and your son do your own systematic study to try to come up with something. And keep trying. It has taken me 70 years to understand my dilemma.

Jump to this post

Thank you. I have all his paperwork together. Need to work on notes., will research tests you suggested. Thank you

REPLY
jackic | @jackic | Jun 15, 2018

Thanks I'm looking into everything. On the whole, we eat healthy and clean.

REPLY
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