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Neurology (Expert Forum)
Where do we go next?
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.
Where do we go next?
by Lkg4ansrs, Nov 16, 2003 12:00AM
My 11yr old son has had chronic foot pain (arches) since he was five. We’ve been to 3 different podiatrists; 2 of which said flat feet. The 3rd podiatrist said not flat-footed, that the problem is in his hips; external rotation causing the foot pain and referred us to a pediatric orthopedic Dr. We’ve seen 2 orthopedic. Drs; neither felt that there was a problem with the hips. My son has had nerve conduction/EMG (traumatic, but normal), MRI of the spine as well as blood work, MRI of the brain (to rule out MS) all normal.
We went back to our 2nd podiatrist who found Morton’s neuroma in both feet. When she removed the 1st one, she noted tight fibrous bands wrapped around the nerve. The surgery helped the intensity of pain, but not the answer. It’s been almost a year since the surgery and the pain is increasing.
We are now with our 2nd neurologist. He reviewed all previous test results and mentioned bulging disks in the spine MRI. The dx is CMT. Reading about the disease we don’t feel that his symptoms are consistent with CMT. My son describes his pain as squeezing and stabbing, doesn’t complain of numbness or tingling. He cannot make it through an entire week in school. He is taking zonegran, gabitril, amitriptyline, as well as Tylenol w/Cod. as needed for pain, which isn’t helping much. He uses ice packs and sometimes soaks in cold water to relieve the pain. He is only 11 yrs old and can’t go through the rest of his life with this pain. We know we need to start over again with Drs, but don’t really know where to go next.
Any suggestions?
We went back to our 2nd podiatrist who found Morton’s neuroma in both feet. When she removed the 1st one, she noted tight fibrous bands wrapped around the nerve. The surgery helped the intensity of pain, but not the answer. It’s been almost a year since the surgery and the pain is increasing.
We are now with our 2nd neurologist. He reviewed all previous test results and mentioned bulging disks in the spine MRI. The dx is CMT. Reading about the disease we don’t feel that his symptoms are consistent with CMT. My son describes his pain as squeezing and stabbing, doesn’t complain of numbness or tingling. He cannot make it through an entire week in school. He is taking zonegran, gabitril, amitriptyline, as well as Tylenol w/Cod. as needed for pain, which isn’t helping much. He uses ice packs and sometimes soaks in cold water to relieve the pain. He is only 11 yrs old and can’t go through the rest of his life with this pain. We know we need to start over again with Drs, but don’t really know where to go next.
Any suggestions?
Doctor's Answer
by CCF-Neuro-M.D.-CS, Nov 19, 2003 12:00AM
It is difficult for me to say if this is CMT with the information you have provided, but there are genetics tests which could be done to look for the known mutations in this disease. Second, a nerve biopsy may help to confirm this possibility. I am not sure where you have received the neurologic opinions from, however given the severe symptoms,a third opinion would be reasonable. If you are in the area I would recommend Dr Neil Friedman. He is one of our pediatric neurologists who has a specific interest in muscle and nerve disorders. If you are not in the area, then you should go to the closest large academic center. Obtaining copies of all the reports and having them sent to the physician prior to the appointment will he make the most of your visit. Good luck.
Member Comments (3)
by Tanya N., Nov 16, 2003 12:00AM
To: lkg
I'm soooo sorry your son is going through this and a child. I've been undiagnosed and looking for answers for 12 years and it has been very hard not knowing and going through so many doctors, test and surgeries. Your son will be in my prayers!!
by merle, Nov 18, 2003 12:00AM
Go to your Doc and ask for a referral to Physical Therapy with an order to "Evaluate and treat". Ask around to see who has seen which PT's and who got good and fast results from whom. Remember, the PT your doc may refer you to is not the only PT you can go to. YOU, the consumer, has a choice in your providor and not all PT's are the same. Let the Physical Therapists work their magic. They have a whole range of treatment techniques that surgeons, neurologists and orthopedists don't have. Good luck!
