Hi, Linda from Montréal here. I'll write a little about myself. I am 38 years old married and have three children. My daughter is 17 and I have two boys 13 and 12. I was first diagnosed having CMT after two EMG's but after having a nerve biopsy last August my neurologist said it is HNPP. I have a lot of pain and take Oxycontin 10 mg. once a day and Oxycodone 10 mg four to five times a day. I also have hypothyroidism and depression. I think the depression is due to the pain . I have tried Neurontin and Tegretol with no success.
My neurologist says that there is no pain associated with HNPP but still sent me to see a pain specialist who was the one who prescribed what I am now taking; it does help but to a limit. I have been wearing AFO's, the left one for two years and the right one for almost one year now. They do help a lot with the footdrop but I find them heavy. They are the metal ones since I had an allergic skin reaction to the plastic ones. I also use Canadian crutches at times or an electric wheelchair at others. I can still walk but not for long distances, 15 minutes tops.
The government decided that I was unable to drive anymore unless I had hand controls. I had to buy a new van in January and it is now being adapted with the hand controls and should be ready by next week. I can't wait to have it since I've been stuck in the house for the past two years. I am glad to be part of this group as I know I will learn more about HNPP with people who actually have it than by doctors who know little about it.
My husband is very very understanding and does most of the house work around here. I can't do much as I tire very easily. The only thing I can still do without to many problems is working on the computer. I've had it for almost a year but I'm just now starting to really use it. I was adopted at birth by wonderful parents and I met my biological family in October 97. No one in my biological family on my mothers side has any neurological disorders and it's impossible to know about my fathers side (they all died) but as far as my mother can remember they didn't seem to have any problems. One of my sisters has lupus but the other two don't have anything except for knee problems.
Meeting all of them and keeping in touch through Internet with them has helped me a little psychologically. I find that I have more of the CMT symptoms than HNPP but I guess the DNA and biopsy must be right. I have very high arches on both feet with severe footdrop and my right arm is loosing a lot of strength which is hard since I am right handed. I do get numbness in different parts of my body but they never go away. I can't really feel the difference between hot or cold and I got a severe burn on my back from an electric heating pad. My feet are always very cold and so are my hands. I was taking care of 8 kids during the day for four years until last summer. I had to stop as I didn't have enough energy to continue. Loosing that income is hard as we now only have my husbands income but my father helps us out when he can, which is a great help because I think we would have lost our house without his help. I can't get any pension because I wasn't paying Quebec pension while babysitting.
If I would have known ahead about the HNPP, I would have gotten a job that would be recognized for disability pensions. I hope to study computer programming and work for a while but I'm not sure I'd have the energy to go back to school yet. I have to learn to take things one day at a time any maybe some day I will feel a little better. I find it really hard to know my limits and stop before overdoing it but when I do feel better I always end up doing too much and paying for it for long periods of time.
I really hope that none of my kids have inherited it but I do think that my 12 year old son shows some signs and I will take him in for tests but not right away since there is nothing the doctors can do about it and he doesn't have any pain. The neurologist said that I have a rare form which is very painful and 15 minutes later she says that it can't cause any pain. I don't think she knows what she is talking about. If anyone knows of a good neurologist anywhere close to Montréal I would try to see him or her even if it's a long drive, we could always stop and rest on the way.
I spend most of my days on the computer or watching tv, that's all I have the energy for these days. I also have to get shots of vitamin B12 once a month but I stopped two months ago because the muscle in which it would be injected would be very sore for at least 3 weeks after the shot and then one week later I'd be getting another one. I have to see my doctor about that and see if there are any alternatives for taking the vitamins. I don't have any appetite and don't eat much so I've been losing a lot of weight in the past year ( 50 pounds) which did me some good anyway but it has to stop as I am now weighing 115 pounds and I am 5 feet 8 inches.
Well I have to stop writing now because my back is killing me from sitting down for so long and my fingers are going numb from typing so much. Please excuse my mistakes since I am French and I do have a little trouble with my English.
Linda from Montreal.