leg pain

Trying to find out if my son is the only one with leg pain and if it has to do with his NF.

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I remember having HORRIBLE leg pain when I was younger...even before I was diagnosed with NF. I bugged my mother so much she asked my doctor about it and he said it was growing pains..but since you brought it up..I wonder if it had something to do with my nf.

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hi , my name is sally ,i live in milano .i have the same pain in alll my left leg, there is a very big tumer up and a lot down,they refuse to operate me ,i just go out from hospital today and they gave me lyrica but after i read the side effect i am very afraid to take it

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ii forgot to say i have nf 1 which i gave it too to my son,he has 15 yrs old and start to have some in his chest

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i have the same pain in my left leg NF1, a lot of times i cant sleep from the pain ,they want me to take lyrica but i am very afraid after i read the side effect,they refuse to operate me,they said they dont know what will happened after the operation because the tumer up the knee is very big and may be i will need more than 3 operations but they must control me by MRI every 6 month

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hi ,i have the same problem in my left leg, i just go out the hospital after intensive controls,in the end no way they cant operate me or better to say they r afraid,so they wrote to me LYRICA as pain killer and they r thinking to give me GLEEVIC but in italy they dont accept to use it out of the lukimia disises so i dont know what i can do and i live with the nf1 which i give it to my son sally

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Met with my neurologist this past week. Results from MRI of lower back came back negative other than to show some spinal disinegration which he said was normal for a man of my age.

Said leg weakness and pain was due to the residual effects of polio and NF1. Take amitriptaline for pain at night (it also is a mild anti-despressant) this in conjection with generic zoloft keeps me from going into a blue-funk.

Just knowing the pain is common to other NF1 patients helps a good deal.

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Met with my neurologist this past week. Results from MRI of lower back came back negative other than to show some spinal disinegration which he said was normal for a man of my age.

Said leg weakness and pain was due to the residual effects of polio and NF1. Take amitriptaline for pain at night (it also is a mild anti-despressant) this in conjection with generic zoloft keeps me from going into a blue-funk.

Just knowing the pain is common to other NF1 patients helps a good deal.

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I also have leg pain mostly in my knee doctor diagnosed as arthritis but i also get pain in m right shoulder and arm doctor found tumors on the shoulder blade cannot do anything about right now just makes my right side weak and my knee cramps on me i also use a cane when in the mall with my mom. on rainy days or really cold days my leg has almost given out on me. doctors will not do surgery on my knee couse they say im too young cmon im 34 and in alot of pain i wish that they can do somthing other than pain pills that knock me out.

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same here thats the 1st thing happen to me the leg pains, it began when i was around 12 yrs old, and now im 27yrs old i have a NF all over my body.

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I have leg pain. in the back of my leg (behind the knee area, not the knee)... my parents always knew I had something there. they did not do anything till i started complaining about it. or recommend me going to a 'joint' doctor. It hurts to sit for extended periods of time. I have not had it removed because main blood vessels run right thru the cyst. the only way to take it out is by laser radiation aka cyber knife. then again it is still risky. I have been going to a doctor (neurosurgeon since early 2005).

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have leg pain in my left leg where i have nf tumor growing inside the leg

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I don't know if it has to do with NF but my older son who has never been diagnosed w/NF always has leg pain especially at night.

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right femur! i have pain they see shadowing in the femur and the drs. don't feel its bad. what do drs know anyway i have the pain

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hello no he is not the only one both my sister and I get leg pain, unfortunatly it only gets worse with age, the only thing that helps at all is to sit in a bath as hot as he can stand it, but this usually only works while in the bath

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I think the doctors say that to everyone they always said the same thing to my mom about me as well

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I have had a lot of x rays on my legs, hips and back but nothing but small cysts were found , Has anyone ever had that experience and will either an MRI or bone scan show more

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my sister who is 45 suffer at lease 25 yrs b 4 the dos found a tumor nf wrap around her knee to her ankle. they have roots. she had it remove now last week she had surgery 2 the other foot cause while her other leg was hurting she put all her weight 2 the other foot which did so damage.so dont ignore any pain that has 2 do with nf.

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I have been living with leg pain all my life.. I am now 39 and the pain seems to get worse with age..When I was younger all the doctors would say is it was growing pains.. Now all the give me for pain is Lyrica and Neuratin.It doesnt help..I was hoping to find someone on here with the same experience so I can print it and shove it in the doctors face..Have your sons legs checked to see if he has tumours growing on the nerves, which is what mostly causes the pain.. good luck to you and your little man..

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I have pain in my left leg all the time.

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Yes I have leg pain time ALL the time,,, my caives are hard like rocks daily doc gave me a water pill but it doesnt help,, feet are also painful daily, pains started behind my right knee, which doesnt feel like knee pain its different,, so listen to your son only he knows his pain,,
do you have a nf clinic in your area???

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