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.
I'm sorry for your husband's pain. And I think it is often just as difficult for the ppl that love the pain sufferer. I had not heard of CMT. The following is what I found in part on a web site for Disorders of the Nerves.
There is no cure for CMT, but physical therapy, occupational therapy, braces and other orthopedic devices, and even orthopedic surgery can help patients cope with the disabling symptoms of the disease. In addition, pain-killing drugs can be prescribed for patients who have severe pain.
I read a few more sites and they all mentioned that orthopedic devices may be helpful. That is all I know. I hope that others will have more information for you. Best of luck and please let us know how he is doing. Take Care, Tuck
hi there, i have been reading several websites regarding your husbands condition. it seems that the braces are mainly to help sufferers maintain thier mobility as keeping active and reducing muscle wasting etc are important. there are many treatments for the pain. in addition to the neurontin(which can be taken in high doses)he should also discuss(with his dr)other options like, tricyclic anti-depressants, other anti-seizure type drugs like tegretol etc. also narcotics are sometimes used(also in conjunction with anti-depressants). there are still options for your husband and he needs to communicate his pain to his dr. one of the websites i read says that the patient with this illness must be responsible for his/her own welfare. he will need to actively work on his own maintennance to reduce the likelyhood of his problems getting much worse. for this it will be important that his mood stays positive. good luck to you.
Tuck Thank you for the reply. I have this same question on several sites because no one seems to know about CMT.
Nick Thank you for the reply also. The doctors around here are very funny about giving pain pills or anti-depressants it seems.
Thank you both again. I don't know you Nick but I hope all is well with you. Tuck I hope all is well with you and your family and that your knees are feeling better. As for me the pains have finally eased up some now, that Spring is here.
I feel so bad for him. He was diagnosed years ago by the navy/marines. Up until about 10 years ago he ran 8 miles a day until his knees got bad and started to give out. They said exercise at this point would just make the wasting move faster now. He is a stubborn man though! It took me 3 years of nagging to get him to actually go to the doctors. He usually only goes when he needs surgery on something. The pain has been pretty bad for the last 6 months though and his toes are curling in now. Once they get so bad I guess they will cut the tendons to release them.
Does anyone know on here what helps (over the counter) with pain since his doctors think he's too young to start on pain pills. Urggg. It still makes me mad that they won't give anything until his older. By then he won't be able to do anything that he enjoys.
Anyhow, I read somewhere that Vitamin C helps??? I think at this point he would try about anything.
Except alcohol. LOL It makes the poly neuropathy worse. Any suggestions on over the counter stuff would be great!
It is annoying when doctors say you are to young to start with pain meds. I got sick when I was 37. I was in major pain for 2 years before i finally got my dr's to prescribe me pain meds. It improved my quality of life so much. So i had to suffer for 2 years just because of my age. If i had been lets say 10 years older they probably would have made me suffer like that. It doesn't seem fair to me. But that is just my opinion
luppygirl Hi. Ya I totally understand. They want him to hold off a good 10 years on pain med's (narcotics I guess) because it is only going to get worse over the years. In the mean while he has to live in agony. When he get's older I guess he can be a happy old man (pain free) looking back on a life that was living he ll whenever it should have been happy years. Sorry for the cussing, but ya I totally agree. I feel for him everyday. And angry at the same time. I've honestly thought about going threw the internet for pain med's for him. My luck I would get busted; LOL just my luck, so I'm too chicken. Thanks for your reply. I really do understand.
Looking for any suggestions of over the counter type med's that might help some.
Can you guys get tylenol with codiene over the counter there. We can here in Canada. They are as strong as tylenol 3s but they are stronger and work better then plain old tylenol. The pharmacist keeps them behind the counter but you just have to ask for them. You can get bottle with 200 pills and all the pharmacies carry them. They also aren't very expensive. I wish i could take them but the codiene gives me heart palpitations. That is the only over the counter med that i know of that is stronger then advil, or tylenol. So i hope you can get it in the states. If not you might want to take a trip over the border. It is very nice here in the summer :)
with your husband being stubborn it may be hard to get proper help. he is the one who needs to put the pressure on his dr's. perhaps if you tell him that his pain is bothering you then he might do it for your benefit.
as for them thinking he's too young, i went through 10+ years of that, and it ruined that part of my life. don't accept that rubbish. he has a right to be treted properly.
You are never too young to have your pain treated properly. I started on Narcotics in my twenties. Thank God they didn't think I was too young. The ins. company refused to pay for my meds for about three years because I was "too young",but when doctors know you are in serious pain they should take you seriously and treat it appropriately. No one should have to live with extreme pain. I bet if that doctor was your husband's age and had that amount of pain he/she would not hesitate to take the appropriate medication. You should find a new doctor who will take him seriously and control his pain properly. There are some funny doctors out there as well as some really great ones. Sometimes it takes a while to find the really good ones.
Best wishes. Audrea
in my post about the tylenol with codiene i wrote that they were a strong as tylenol 3's what i meant to say was they they aren't as strong as tylenol 3's but stronger then extra strength tylenol. Sorry about that.
My daughter has CMT and I am surprised at the Drs. that dont know what this is. I had to take my mom to Dr. BANKS in Dekalk, Ga for leg surgery a couple of mths ago and he knew all about it. It really surprised me. He was the first Dr. I had met that even had a clue. My daughter is a RN and found out she had it 2 yrs ago. I dont know anything about the things you were asking about but I will ask her. Dr. Banks has wrote several books and you might find one online concerning CMT or look him up and call and ask his office for some info. It couldnt hurt. Lots of Luck
I talked to my daughter today and she said the only thing the Drs. had talked to her about was some sort of braces for your feet and legs. That is when the time comes. She complained of her muscles hurting today.
Hi and Thank you. My husband had some problems as a child with this and threw the military. The wasting and miss firing has been getting worse each year now for the last 5 years. The pain is quite bad.
He is getting the AFO's, inserts and shoes soon. We had to get help from Muscular Dystrophy to cover the cost. They are very pricey (over 3000.) and the insurance does not help with them at all. I just really hope they help with the pain. I've been talking to the people from the MDA and CMT organization and they feel as if it will. So fingers are crossed, toes, etc. LOL His attitude at times drives me nuts. Though everyone shares their pains differently so I just keep reminding myself of that. ;-< Sooo hoping this works for him.
Thanks for asking your daughter. That was really nice for you to do. I know in my husbands earlier years he used to run alot and work out to keep his muscles strong. They say it helps with the progression as long as you don't massivly over do it. ;~)
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