Mysterious Ilness

[sense22]

Can an expert please answer the question about my son as follows theses are his symptoms. My son is a 6'2" tall 183lbs 16 years old black male who started having pain in both of his legs below the knee; which runs down to his ankles; about three years ago.  Doctors thought it was shin splints and instructed him to do exercises and to take antiinflammatory meds.  He did what was instructed but the pain worsen and he begin to have stomach problems and lost a considerable amount of weight.  They said his blood work showed a low white blood cell count and they tested him for HIV and other ailments and they all came back negative. He was sent to a GI specialist who tested him for Crohn's disease and that too came back negative.  He was instructed to rest from playing basketball for 6-8 months to see if that would help the pain in his legs in which they still were thinking shin splints.  He did that and resumed playing basketball and noticed that the pain in the legs was still there along with the stomach issues.  He played a game and almost passed out and complained of excruciating leg pain, stomach pain, nausea and blurred vision and shortness of breath.  He has the sickle cell trait and doctors thought he may be having an episode like people who actually have the disease.  Well he tried to play ball once again and the same ailments prevailed and he was rushed to the hospital were they performed an emergency appendectomy; however, once they removed his appendix they said it appeared to be normal and that they thought it was not the cause of his problem.  We were instructed to see a surgeon to perform surgery on both of his legs this past June 2010 for compartment pressure.  It is now March 2011 and the leg pain is the same as before the surgery; but now both legs are sensitive to the touch.  He continues to play ball through the pain but has been having episodes of dizziness, blurred vision and confusion along with the stomach pain, leg pain and shortness of breath and bouts were he express it feels like his heart is cramping all this is happening while he is on the court; after several games he gets so incoherent that he just kneels down on the court while the game is in process.  While on the court; it seems as if he is in slow motion and he looks like a person who might be on drugs.  Note:  He does not do drugs and will not take the many prescribed narcotics such as perococets(sp) oxycodone, hydrocodone and many others, because of the way he said they made him feel; so he would refrain from taking them.  He saw a Hematologist, a Neurosurgeon for the nerves in his legs and had an Ekg performed on his heart.  He also has exercise induced asthma and flat feet(he wears specially made inserts in his shoes).  The pain has progressed to his kneecaps and back and he has unexplained itching spells and a cough he can't seem to get rid of. Now after playing ball his whole body goes into spasms, cramping and makes it impossible for him to walk or stand and he says the stomach pain is unbearable.  Please please help!!!!!!!
pain in both legs below the knee(even when resting but not as profound)
stomach pain
sharp pains above the hips(hurts when walking at times)
blurred vision(when playing ball)
shortness of breath(when playing ball)
heart cramping(when playing ball)
nausea(when playin ball)
Whole body spasms/cramping

[squirtatious]

It wouldn't hurt to get an mri of his back, hope things get resolved!!

[Londres70]

He only had an EKG and no other Cardiac testing?  If the answer is yes, I would recommend consulting a cardiologist.  

He has had his inflammatory markers checked?  ANA, RH factor, Sed Rate?  

Sounds either cardiovascular or autoimmune.  

[youngwife]

I am very sorry that your son has been struggling with these symptoms.  I am not an expert by any means, just a mom.  A mom that has a 16 year old daughter with a condition called, Chiari Malformation.  Does your son ever have headaches??

There are many, many conditions that could very well be the cause of his symptoms.  It definitely sounds like the doctors have failed to really get to the root of the cause.  And I pray that he does NOT have Chiari.

*IF* he should have the symptoms of Chiari, I would recommend seeking out Dr. Michael Rosner in North Carolina.  Just Google his name, and his website will come up.  You can email him with your questions, and see what he says.

Like I said, it's very possible that it is not Chiari, but just in case, do some research on it, as your son't best advocate!  Hang in there and don't give up!  It took us nearly a year to find what was causing my daughter's slow and painful decline.

(((((HUGS))))))

Blessings to you and your son,


Rebecca