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Q: Son Is Getting Worse, Need Help With Diagnosis.
asked by: Roy Sherrid on December 9th, 2004
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My son is 21 y/o and has had neuroligical problems since birth. He's had numerous diagnosis thru the years, starting with cp, then fredreich's ataxia, then huntington's chorea, and finally non-specific progressive dystonia. He's had every test under the sun: lab-bloodwork, ct, mri, dna studies, bone scans & muscle biopsies. The doctors all give up & just treat him symptomatically. Now, his symptoms are getting worse! He has lost 10 pounds in the last year and only weighs 130. His muscle coordination and gait problems are getting worse. His eye twitching & neck arching is getting more frequent & lasting longer. Sometimes his legs will give out without warning & he'll fall very hard, and it will take him several seconds before he can regain control of his muscles to stand. His arms & hand will uncontrollably shake, causing him to drop things. The severity and frequency of all of these symptoms is increasing, but we can't get the doctors to do anything. Can anyone please help us?
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mystknty replied on May 2nd, 2006
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Re: Son Is Getting Worse, Need Help With Diagnosis.
roy sherrid wrote:
my son is 21 y/o and has had neuroligical problems since birth. He's had numerous diagnosis thru the years, starting with cp, then fredreich's ataxia, then huntington's chorea, and finally non-specific progressive dystonia. He's had every test under the sun: lab-bloodwork, ct, mri, dna studies, bone scans & muscle biopsies. The doctors all give up & just treat him symptomatically. Now, his symptoms are getting worse! He has lost 10 pounds in the last year and only weighs 130. His muscle coordination and gait problems are getting worse. His eye twitching & neck arching is getting more frequent & lasting longer. Sometimes his legs will give out without warning & he'll fall very hard, and it will take him several seconds before he can regain control of his muscles to stand. His arms & hand will uncontrollably shake, causing him to drop things. The severity and frequency of all of these symptoms is increasing, but we can't get the doctors to do anything. Can anyone please help us?
i'm not a doctor or neurologist,but my 3 year old has had the same type of tests since birth and the same type of symptoms-along with severe developmental and speech delays,her first dx. Was hydrocephlus with recurrent generalized seizures.5 months ago her childrens hospital nuerologist was able to diagnosis the exact type of epilepsy she has .She has what he calls a hot spot in her left temporal lobe of her brain which can cause a list of things mentioned above-this type of epilepsy is called complex partial epilepsy. I hope this can help but i'm not a doctor,our prayers our with you.
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mystknty replied on May 2nd, 2006
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Re: Son Is Getting Worse, Need Help With Diagnosis.
roy sherrid wrote:
my son is 21 y/o and has had neuroligical problems since birth. He's had numerous diagnosis thru the years, starting with cp, then fredreich's ataxia, then huntington's chorea, and finally non-specific progressive dystonia. He's had every test under the sun: lab-bloodwork, ct, mri, dna studies, bone scans & muscle biopsies. The doctors all give up & just treat him symptomatically. Now, his symptoms are getting worse! He has lost 10 pounds in the last year and only weighs 130. His muscle coordination and gait problems are getting worse. His eye twitching & neck arching is getting more frequent & lasting longer. Sometimes his legs will give out without warning & he'll fall very hard, and it will take him several seconds before he can regain control of his muscles to stand. His arms & hand will uncontrollably shake, causing him to drop things. The severity and frequency of all of these symptoms is increasing, but we can't get the doctors to do anything. Can anyone please help us?
i'm not a doctor or neurologist,but my 3 year old has had the same type of tests since birth and the same type of symptoms-along with severe developmental and speech delays,her first dx. Was hydrocephlus with recurrent generalized seizures.5 months ago her childrens hospital nuerologist was able to diagnosis the exact type of epilepsy she has .She has what he calls a hot spot in her left temporal lobe of her brain which can cause a list of things mentioned above-this type of epilepsy is called complex partial epilepsy. I hope this can help but i'm not a doctor,our prayers our with you.
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