My son just turned 18 and has a yet undiagnosed, chronic syndrome or disorder. We have been to numerous specialist and although many diseases have been ruled out, nothing yet has been ruled in. He just found out today that he will get to graduate from highschool after missing months of school due to his illness . It has been hard on both of us, but we try to look at the positive. He does not have cancer, lupus, leukemia, or a variety of other auto-immune disorders. His main symptoms are transient body pain, constant pain centrally located in his left knee and hip, chronic mouth and throat ulcers similar to canker sores, low white blood cell count, vitamin D deficiency, low body weight (he is 6'1" and is down to 114 pounds) and is fatigued most of the time. Throughout the past 14th months we have been to neurologists, rheumatologists, internalists, allergists, and a pain clinic and nothing has been resolved. Until his junior year, Josh ran cross country track. Now he "walks" with a cane and has to use a wheelchair for long outings because he simply is in too much pain and just runs out of energy. We have tried a slew of medications. He just started taking Savella (he was tried previously on amytriptyline, neurontin, and cymbalta) and also takes Opana, propranolol, and a flector patches and a variety of vitamins and minerals to help. It is very frustrating not knowing how to help him and seeing him in pain and frustration and not knowing what to do. I hope that I can learn more from others going through similar situations and give and receive moral support. I am looking forward to hearing from other people who are going through this sort of thing or who have friends or loved ones going through this. Any advise, options, horror stories, or new ideas are most welcome. Thanks and I am glad to meet everyone in advance,

Sheryl

Sheryl, I'm glad you found us here at NeuroTalk. This is a great place for info and support.

I'm so sorry about your dear son. I'm sure you would trade places with him in a heartbeat. Its so hard to see our children suffer. What a mystery that nothing seems to help and the docs can't seem to pin down his disease.

Great news that he will be able to graduate from HS! Please keep searching every avenue you can think of -- keep trying! I hope you'll have success soon and a treatment for him. Please check back here often and let us know how you are both doing.

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

It is great to hear he will be able to graduate. Tell him gradulation.

There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

--though I'm sorry about the situation that brings you here.

It sounds like your son has had a lot of testing--but we always wonder here just how thorough that might have been; a lot of non-speciality docotrs have somewhat limited conceptions of what might possibliy lead to certain symptoms outside their own areas of expertise.

Could you be very specific with what tests he's had, and what the results were? There are a lot of very good interpreters here.

Also, while this series of spreadsheets was compiled primarily for people with neurological symptoms of unknown origin, it's been very useful for a wide range of people, simply because neurological symptoms can be caused by so many things:

www.lizajane.org

A great way to track results over time, and suggest other avenues to doctors. I know that when I read what you posted, I wondered if yoru son had been tested for celiac/gluten sensitivity and anti-nuclear antibody vascular/connective tissue disorders beyond lupus, among other things.

Hello, and welcome to NT! There are so many caring, friendly, and helpful people here.

I'm so sorry your son has been going through so much. My heart goes out to him and you.

I honestly don't know which forum(s) to recommend to you. Just have a look at any you would feel comfortable with, check them out, and post there what you've posted here. Someone will probably jump in with advice.

I wish your son all the best.

welcome sheryl and DS.

i'm so sorry to hear what your son has been going thru.
i wish i could offer more advice but i wouldn't know what.
could his drs who can't find what's wrong possibly refer him to someone else?

keep advocating for him and pushing the dr to find answers.

Do you think he is losing weight mostly because of the mouth sores, or a cumulative of everything?

Are they looking at rare diseases? or combination of diseases?

I am guessing they checked for Lyme & Chronic fatigue syndrome??

I know a rare disease called Pemphigus Vulgaris will cause mouth sores and cause severe weight loss. It is autoimmune , but rare.
Just mentioning it as I knew someone who had it-
info-
http://www.google.com/search?q=Pemph...ient=firefox-a

Have you considered Homeopathic/Naturopathic dr?

If the MDs can't figure it out maybe try an expert in alternative care?


Have any special mouth rinses for the sores been tried??

Welcome to you both

so sorry he has not been diagnosed yet. not knowing can be really frustrating.

I would look to alternative medicines at this point. knowing that he does not have many dreaded diseases is a plus, but sounds pretty devasting to him if he's going downhill right now.

I would inspect his environment a little closer. Maybe even move him out of his room into a more sterilized setting.

Right now, I'm looking into trying catcus juice, to rid the body of impurities and inflammatories. All natural and from mother earth.
Here is the link http://www.sonorancactusjuice.com/

I sure hope you find some answers soon and he starts his road to recovery.

Congratulations on completing high school. That is commendable.

See ya around.

Welcome to this truly wonderful community! I am so very, very sorry why you found us and I feel so badly for what your son is going through. His pain and frustration must be so high; I hope he gets great pleasure and that feeling of true accomplishment from his graduation. To achieve that while going through his medical challenge is really worth admiration and great praise!

I am certainly not qualified in any medical capacity, whatsoever, and please do not take this as more than just my thoughts. Something immediately leaped out to me from my own recent experience as I read his symptoms, types of specialists seen, drugs used, the results that ruled things out without finding the real problem.

Might your son have slipped into the effects of malnutrition caused by what the doctors are looking for? Even though I presented all the classic malnutrition symptoms at every later Dr appointment (significant weight loss/weight not near the low-end for height, mouth sores, severe pain that was more pronounced in joints, fairly sudden inability to walk), they didn't 'see' it. They continued the search for some disease, while its by-product was overpowering the real problem and doing great harm.

Again, all just simply thoughts. Maybe a complete, current blood panel on all vitamin, protein, sodium, hydration, and other indicators of moderate/significant nutrition? A person will get to the point where they simply do not want to eat from fatigue, alone.

I know you will find support, hope, and pointers here. It is truly full of great folks who will, at bare minimum, give you tremendous emotional support.

My name is Carol and I have been diagnost with RA, High chlorestral, small fiber sensory. I am married, have a son, 2 wonderful grandkids, work as a contract analyst.