[marioblub]

My son is 19 and has been sick on and off for some time but the last year his illnesses have intensified and he is very obstinate, wont go to the doctor until he is really really bad and is secretive to me. Earlier this year he collapsed and I had to call an ambulance his blood sugar had dropped extremely low. They waited until his blood sugar levels increased but during that whole period of time he did not mention once that he was being tested for leukemia. After they left I overheard him talking to a friend and he informed me that his white cell count was extremely high and his platelets low and that he had had 3 bone marrow tests and was getting the results the following day. I demanded I accompany him to the drs and barged in to get results. Relieved that he hasn't got leukemia I am still extremely concerned about his health. His symptoms include chronic vomiting, abdominal pain, headaches, dizziness, insomnia, chest pain, severe leg pain mainly in shins, night sweats, fevers, extreme fatigue, bruising, skin discolouration, cannot concentrate and now his jaw movement is severely restricted so that he cannot chew and is living on soups, yoghurt and icecream. He has pulled out of uni and spends all day and night either resting on the couch or lying in the bath to relieve the pain in his leg. I am thinking he probably has some kind of autoimmune thing but don't know what or how to get him to get help. When he was young docs kept saying his migraines and pains were stress or couldn't find anything wrong aand I think this is why he doesn't like going. Any advice or help anyone could give me would be greatly appreciated

[mrsD]

Welcome to NeuroTalk:

As a mother, I certainly can understand your concern! That is alot on his plate, and he is rather young to understand it all!

Has he been evaluated for Crohn's disease?

With all that GI stuff going on, nutrients are probably lacking
as a result. Not eating or vomiting alot, they can get skewed pretty quickly.

First off have him add epsom salts to the bath when he soaks.
6-8 oz in a tub lukewarm water. This will provide lost magnesium, and this may help the leg pain some.

Does anyone in your family have pernicious anemia or neuropathy in the hands or feet?

Low B12 can occur in young people with poor diet or genetic or autoimmune damage to the cells in the stomach making intrinsic factor.
Here is a very good video illustrating how sneaky low B12 can happen to different types of people:
http://www.youtube.com/watch?v=BvEiz...ature=youtu.be
Also once tested you have to make sure the doctor interprets the results properly... many still say "normal" when in fact low is being reported. The NEW acceptable low today is 400pg/ml.

Bruising can be from low Vit C intake, or from autoimmune vasculitis. Has he traveled abroad lately, or has he had alot of vaccines all at once? Vaccine injury can resemble autoimmune disease and/or trigger it.

If you can find a holistic or integrative doctor for him, he might get better diagnositic evaluations.

A really high white count can come from GI infections, and a gall bladder inflammation or an obstruction of the intestine can provide really high white counts. Also chronic appendicitis can be missed this way. Crohn's, etc.

It sounds like he needs a new doctor.

[Magirose]

hi, your son's symptoms certainly sound a bit like my life story - eating nothing but soups etc, I have a history of this going back to childhood. I think through a combination of feeling sick a lot and having gastric problems my appetite has always been shocking. When I feel really bad I retreat to eating what I think of as 'baby foods'. Not literally baby foods, but soups and things which are easy on the stomach and not heavy foods. I have a lot of fellow sufferers who do the same.

It took a long time but I was diagnosed with Behcet's disease about 8 or 9 years ago. I don't think your son has this, but Behcet's is part of a family of auto-immune disorders with the kind of symptoms you describe. All of his symptoms are symptoms I have....the pain in the muscles, inflammatory bowel issues. I really recommend you encourage your son to be seen by an immunologist. This was how I finally got a diagnosis at the age of about 42 after years of suffering. It was such a relief just to be diagnosed. Getting the right treatment has been difficult but so worthwhile pursuing. I'm not qualified to say if he has anything else going on.....you mention leukemia. I'm not qualified to comment. But I do know every symptom he has are either symptoms I have had or symptoms friends on my support group have suffered.
And I'm afraid I don't know how to get him to talk to you about it. I know some young people who are diagnosed with Behcet's. Whether or not some of them would speak to him. Would he be willing to do that? Even if he has something quite different it might be good to talk to someone about the symptoms who is suffering similarly and is in his age group.

[laurel.1970]

Originally Posted by marioblub

My son is 19 and has been sick on and off for some time but the last year his illnesses have intensified and he is very obstinate, wont go to the doctor until he is really really bad and is secretive to me. Earlier this year he collapsed and I had to call an ambulance his blood sugar had dropped extremely low. They waited until his blood sugar levels increased but during that whole period of time he did not mention once that he was being tested for leukemia. After they left I overheard him talking to a friend and he informed me that his white cell count was extremely high and his platelets low and that he had had 3 bone marrow tests and was getting the results the following day. I demanded I accompany him to the drs and barged in to get results. Relieved that he hasn't got leukemia I am still extremely concerned about his health. His symptoms include chronic vomiting, abdominal pain, headaches, dizziness, insomnia, chest pain, severe leg pain mainly in shins, night sweats, fevers, extreme fatigue, bruising, skin discolouration, cannot concentrate and now his jaw movement is severely restricted so that he cannot chew and is living on soups, yoghurt and icecream. He has pulled out of uni and spends all day and night either resting on the couch or lying in the bath to relieve the pain in his leg. I am thinking he probably has some kind of autoimmune thing but don't know what or how to get him to get help. When he was young docs kept saying his migraines and pains were stress or couldn't find anything wrong aand I think this is why he doesn't like going. Any advice or help anyone could give me would be greatly appreciated

Hi, my goodness I can't even imagine your concern! While I can't give any advice medically, I am concerned with his nutrician. Have you looked into fresh juicing? This would be something he could do with limited jaw. Bodies can't heal themselves when they don't have sufficient and health fuel. Good luck and best health.

[Vowel Lady]

I saw the heading of your post and it struck me immediately. I recall when I was dx'd with Lupus, how very worried my mother was and today, I'm a mom myself of two adult "children."

Today, I actually have multiple autoimmune conditions and these symptoms don't really match up with anything I have. But you are correct, sometimes these odd symtoms can in the end, indicate an autoimmune problem. Does anyone in your family suffer with them?

We have an extended family member with ulcerative colitis and when it was at its peak, she was very limited in what she could eat and did seem to gravitate toward soup.

I have discovered all sorts of things by getting my vitamin levels checked and optimizing them...especially those that are clearly "off" has helped me overall and in major ways....so I hope your son would consider this type of testing with his GP or an integrative doctor.

Also, often when you have odd symptoms you have to be your own advocate and this likely means going to more than one doc, more than one specialty. I hope he will be open to this if needed...but if the discomfort continues, spchances are he surely will. If he has a very close friend or a girlfriend, you might have them advocate for this with you.

Wishing you and your son well.