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Old 11-21-2000, 06:51 AM   #1
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Post Need Help with Son's diagnosis

Two and a half months ago my son was a healthy energetic teenager starting high school. Now he's in a wheelchair outside the house, crutches inside-this is due to severe joint pain especially in the knees. He can no longer read because of the severe headaches that emerge from the constant background headaches he has. He is always tired, sometimes has tremors, dizziness, some short-term memory problems and irritable bowel. This all began with hives and joint achiness. The hives are gone but the joint problems remain. He had negative results on all tests so far (blood work, ANA, lyme titer). The doctor says its probably a virus and will go away on its own. The more I learn it seems that it takes months sometimes to test positive on any of these tests. My son feels the doctors don't feel anything is wrong we feel something is. Any thoughts - we'd like to hear them. Thanks, Debbie


 
Old 11-21-2000, 09:31 AM   #2
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In 1997 I had joint pain, hives, fever, and ulcers in my throat they originally called it a viral synovitis (which means a virus settled in the joints) I too tested negative for Lyme etc. However, 3 years later I am now diagnosed with
EBV, CFS, and Fibromyalgia. I am now 34 years old with a 13 & 14 year old and have not been able to work. My whole life has changed to say the least I went to 2 Rhuemotologists and finally my Internal Medicine doctor diagnosed me because they wouldnt.
I hope this helps shed some light and if you get any new information pass it on Good Luck to you and your son
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Old 11-24-2000, 11:33 PM   #3
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I had similar symptoms with extreme fatigue (sleeping up to 16 hours a day), bad headaches, also dry skin and dry eyes and other weird symptoms that came a went. They thought I had lupus, chronic fatigue, fibromyalgia, arthritis ... Turned out I had a problem with my pituitary gland. It wasn't producing hormones anymore.

Go to your GP and have blood tests done for prolactin, TSH, cortisol, IGF-1 and testosterone. Prolactin is a female hormone and if it is elevated in a male, you have pituitary problems. Have IGF-1 check to be sure growth hormone is still working. It has been shown that a lack of growth hormone causes fatigue, mental problems, and muscle and joint pains.

 
Old 11-28-2000, 04:37 PM   #4
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Doesn't it drive you nuts when they do a few blood tests and say you're fine. If you were fine you wouldn't be there. I agree with orion, and have the hormones looked at again. There is new information out about thyroid testing and differing opinions regarding results. The most common test is the TSH (thyroid stimulating hormone) Most of the time they won't treat thyroid if TSH isn't over 6 or under .5. (HYPOthyroid) There is new information out that maybe they should treat for hypothyroid if the TSH if over two and you have the symptoms. A lot of the symptoms you mentioned could be hypothyroid. There are something like 50 symptoms for hypothyroid. For more information on thyroid go to About.com and check out health/thyroid. Mary Shoman's site. Good luck

 
Old 12-01-2000, 11:57 PM   #5
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Try the healthboards Thyroid Board also.
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Old 03-05-2004, 12:13 PM   #6
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Re: Need Help with Son's diagnosis

Quote:
Originally Posted by CJ
Two and a half months ago my son was a healthy energetic teenager starting high school. Now he's in a wheelchair outside the house, crutches inside-this is due to severe joint pain especially in the knees. He can no longer read because of the severe headaches that emerge from the constant background headaches he has. He is always tired, sometimes has tremors, dizziness, some short-term memory problems and irritable bowel. This all began with hives and joint achiness. The hives are gone but the joint problems remain. He had negative results on all tests so far (blood work, ANA, lyme titer). The doctor says its probably a virus and will go away on its own. The more I learn it seems that it takes months sometimes to test positive on any of these tests. My son feels the doctors don't feel anything is wrong we feel something is. Any thoughts - we'd like to hear them. Thanks, Debbie
Many physicians do not understand CFS or any illness that they cannot explain without test that verify their diagnosis. You cannot really fault them, because that is part of their training. It does not mean that your son is not ill; it means that the doctors do not know how to treat him.

Have you consulted an Infectious Disease specialist,who is most likely to determine your sonís illness and recommend suggestions? Good Luck. truerd

 
Old 03-08-2004, 09:44 AM   #7
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Re: Need Help with Son's diagnosis

Dear CJ,
My son has been ill since November, as well. He'll be 15 in April. Makes us feel SO helpless not to know where to start in suggesting other possible causes. You say he's had a lyme titer? I happened to see something on Lyme that perked my interest, so went to a website about it, where they made quite an issue out of seeing a "Lyme doctor", to be sure you didn't get a very common FALSE negative. They say there is a test (I hope I remember this right) called the ELISA, which I think is the one you can't always believe. Anyway, the main thread is that going to a Lyme specialist (didn't know there was such a thing!) is essential! Hoping and praying that you will soon find the answer, and it will be an ailment that is easily cured. Tomorrow we go to a Dentist, because a friend of mine was telling me about a boy who had an abcessed TOOTH which cause him to have a brain infection of some kind. They originally diagnosed him (a teen, as well) with Chronic Fatigue, then thought it was Lupus, then finally gave him Prozac for a while for depression. Was none of the above; was the tooth! So happens my son's attention has been drawn to his teeth lately. He says his front teeth have been smooshed together tightly by incoming wisdom teeth! His symptoms are mainly fatigue, exhaustion and muscle weakness and lack of stamina, postural hypotension (lower blood pressure when standing from a sitting position), some rapid heart rates, shakiness in the mornings, some knee pain, low grade fever, lack of appetite, but desire to eat normally, weight loss, fuzzy-headedness (unable to concentrate on academic tasks). Anyway, it preys on my mind non-stop. I always feel that time is of the essence, and we MUST find out what's wrong before the condition does any more damage. Addison's Disease is something I've come up with that matches my son's symptoms, as well. That would go along with the recommendation to get morning cortisol levels tested on your son. They also say you need an ACTH test to determine whether this is the diagnosis. I suppose these things, too, shall pass for us all. I pray it will pass soon.

 
Old 04-20-2004, 03:38 PM   #8
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Re: Need Help with Son's diagnosis

Debbie what state are you located in?

I highly recommend that your son be evaluated by a Lyme knowledgable doctor. No Lyme test is completely reliable, and from what I understand the ELISA, or titer, is the least reliable of all. A knowledgable doctor will run more extensive tests and consider your son's entire history. He should be tested for all the co-infections that ticks can also transmit--Babesiosis, Ehrlichiosis HME & HGE, and Bartonella. Many of his symptoms sound like those from tickborne illnesses.

If anyone thinks this could pertain to their situation, please go to the Lyme board on this site and read the post "Lyme Disease Information."

Last edited by ticker; 04-20-2004 at 03:41 PM.

 
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