My husband has Charcot-Marie-Tooth (CMT). The pains in his feet and legs are really bad. They gave him Lodine and Neurontin for pain ~ 3 weeks ago. It is NOT helping at all. They will not give him anything else for pain because of his age (44) because they said it is only going to get worse over time. His EMG showed 16 nerves that were effected. I guess they are miss firing. The pain is terrible.
They want him to get CFOS/Carbon Fiber AFOS for both feet, inserts for his shoes and special shoes. They are all VERY expensive. The MDA will help pay for 2/3 of the price.
My question is has anyone used them/ or knows if it helps with the pains? Any comment would be greatly appreciated. I hate to see him in so much pain.
Thanks for the reply anyhow. I don't think his Dr even knew what CMT was. He has been taking Neurotin now for about a month. It is not helping with the pains though.
They want him to get Bilateral Articulating Ankle Foot Othoses, Bilateral custon Foot Orthotics and Bilateral Orthopedic Shoes. This is to prevent it from getting worse concerning the poly neuropathy, muscle wasting, hammer toes etc.
He is at the point where he only wants rid of all of the pain. Times are hard now and they cost over 3000.00 dollers. I will do whatever it takes if it helps him out though. I'm not sure how much it will help with pain though.
Anyhow....sorry about going on. Thanks for the reply. I also have this post in a few extra forums hoping someone can answer it. Thank you again. ;~)
Your husband needs to see a different doctor and certainly a neurologist at the the MD Clinic. The visits are free, and they paid 100% for my son's AFO's. He also has Charcot Marie Tooth (CMT).
Most doctors will never see a patient with CMT, so it is important to call the MDA Association and ask about their free clinics. I believe the free clinics are once per week, and a patient can go in as much as he/she needs, as long as the symptoms are CMT related. The MDA paid 100% for my son's AFO's. He needs to have them fitted again, and the MDA will pay for this every three years.
Also, get on the MDA mailing list, as there are groups of other CMT patients who routinely meet. You'll be able to find another doctor that way too, if you want to see one privately. You'll also receive their monthly magazine, Qwest.
My husband is very stubborn and will not where them out and very little around the house. It makes me want to scream! I can't do nothing else to help him to feel better.
He says his feet and legs feel broken 3/4s of the time though and standing hurts too much. Plus the brace part rubs on his ankles. The doctors will not give pain meds for this and he refuses to go back to any doctor. Urggg. I think if they would give him something for pain maybe he would be more eager to try them.....the only thing then would be getting over what they look like. Personally I think it's hard to tell they're even on with jeans other than his shoes are larger.
If I was in his shoes, I know I would were them. He is verrrrry stubborn though! It drives me nuts sometimes. Sigh.
Thank you so much for your reply. As for the MD they were great in helping us to get them. They paid for the first 2000.00 and I paid for the rest out of an nest egg I had saved. I'm hoping that someday he will were them.
What can we do with our men.....LOL...I could think of quite a few things. Grrrr ha ha.
I Love him dearly but sometimes I want to Scream! I don't know what causes all of my pain and he does, yet wont do what he is told and yes I guess out of pride and some personal issues with him. Urgggg.
His veins stick out in his legs ~ one inch high and are 1-1/2 inches wide. I'm terrified that he is one day going to have a heart attack or stroke. His feet (hammertoes) and legs are very bad, and now it's effecting his hands. Sigh
Unfortunately not too many people know about CMT. I would like to see that change and will try to make a difference.
I have to admit I knew nothing about CMT until I read your post - I'll defnitely take a closer look at this.... it may be MD and not MS and a different disease process, but we are still in this together!
I thought I would give you a link on Charcot-Maria-Tooth (CMT) Also known as Hereditary Motor and Sensory Neuropathy (HMSN) or Peroneal Muscular Atrophy (PMA)
in case you have others that question it. The MDA covers this quite well too and anyone that needs treatment or financial help they are great to help out once you join. In order to join though you have to have a diagnoses.
The link to the CMT site is: http://www.charcot-marie-tooth.org/
thanks for the link. I have been reading on their site for a while now. I'm glad to see there is a blood test to confirm CMT and these patients don't hang out in limboland like many MSers do.
My attention was really peaked when I was reading about peripheral neuropathy - which I have - and the neurotoxicity of some drugs. I'll have to disucss all of this with my neuro next time. Not that I think I have CMT, but the toxic question is good to know.
Please stop through on ocassion and let us know how you and your husband are faring.
There is a blood test unfortunately it cost a lot ~2000.00 and a lot of insurances will not pay for it, nor will they pay for the braces. My husband was diagnosed back in his teenage years while working in the military as a Navy corman.
I think the CMT site has a list of drugs that should be avoided including over the counter. I hope your appointment goes well. I myself also suffer from pains and spasms threw out my body; but, I'm sure nothing at all compared to what my husband or people with MS do by far. This winter will be hard on him too. I think I mentioned he's a verrry stuborn man. ;~/ After hunting season he will be hurting bad! I hate to see the day comes that he can't get out in the woods. ;-( I call him my mountan man. LOL
I hope your husband feels better. I'm sorry he's sick. I also have a husband with peripheral neuropathy, although the doctor doesn't believe his is CMT, but idiopathic small fiber neuropathy. He's also a hunter, and this has severely limited him. His feet feel as if he's walking on glass.
My son's CMT doesn't cause pain because his CMT is more progressed. His legs and feet feel like concrete. He also has palsy in one hand, very thin legs, hammertoes, etc., and has for years. This is what happens after the nerves are severely damaged, the feeling turns into concrete. It's not anything to look forward to. My son never had the pain, his CMT started out a higher level as he has had this all his life. He doesn't wear his AFO's all the time. For quite awhile, he was embarrassed, even though they don't show under his jeans. He needs to have them re-fitted. I believe they help against foot drop and tripping.
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