Hello. My son has been seen by several doctors, from internal to ortho and no one can figure out what's wrong. He's 23. 6' and might weigh 118, wet. He lost about 20-25lbs from age 19-22. He's trying not lose anymore. He was a normal kid, tubes in ears(age 5) and hernia(age 8, repaired). He was a drummer in a band and can no longer play because of the pain. His quality of life is not what it should be for a 23 year old boy. His neck is VERY, Very stiff. He cannot move it up, down or side to side. He has NO range of motion. He tries to do stretching excersizes and they don't help at all. Also has been trying baths with salts and creams to rub into the muscles, all with little or no help. His back and hips hurt him alot, as well as his knees/ankles. One vertebrae in the top of the thorasic region is to the right about 1/2 an inch. We've shown this to every doctor and they don't seem to care. He is very skinny. Like homeless man skinny. He eats when he is hungry. The dr's have checked: thyroid, diabetes, anemia(Very Low Iron), his CPK level, the RA test, as well as all the normal tests. They have done so many blood tests and just come up with very low iron. They have also done xrays and the ortho Dr didn't seem concerned. His brother was diagnosed with Polymiositis when he was 5, however after being put on steroids, it either resolved itself, or was an incorrect diagnosis. Either way, he's fine. There is a history of RA and CFS on his dad's side. He has no insurance and he is in REALLY bad shape! I can't get a doctor to see him without a lot of money, that neither of us have. He has been taking 2 motrin in the morning and 2 at night for about 4 years. I fear for his liver and kidneys....but, if he doesn't take them, he is really really really stiff and has a hard time moving. I know he's got to be depressed about it too. I would love it if someone would help him and figure out what's wrong! We would both be eternally grateful!!!! Any suggestions? He lives in FL and I'm in GA, about 6 hours away. I can be contacted at cuttingras@yahoo.com. Thank You in advance for your reply.
The best thing I can recommend to you is to keep going to doctors, to keep pushing, because you're right - something is definitely not right about the situation. You have a teaching hospital in your area? If so, try there, as they tend to have better resources.
Lisa Emrich, one of our Experts wrote a post about what to do if you don't have insurance that may help you get medical care for your son.
Good luck! Please let us know how things go?
Have him checked for marfans syndrom. Signs of it are being tall xtremely thin, sunken chest doubleand or sore joints, and other various other medical problems. Both of my boys have symptoms of marfans but not deadly parts like the aorta anerism. they are both rail thin with sunken chests my mothers grandfather had it and they did not know till he died from it. Don't freak out about it do some research and have him mention it to the next doctor. Both my kids live a very normal life.
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Thanks for your reply. I've heard of the disease(?) Marfans Syndrom. Didn't know what it was. Wow....I will definitely research it. I freak out because we've been going to Doctors too long now for them not to know what's wrong. He's wasting away and in constant pain. :) Ya know, my other son, whom I mentioned is 6'6" and skinny. The doctor says the only body fat he has is a little in his butt, other than that none. He's achy all the time but not stuff like his brother. Wow. Thanks again and I'll let you know the next time he comes up and we go to a doctor. Might be a while, we're still paying for the last 2. :(.