Towie
I have read about many possible causes of MP and I believe there are many. I am not positive what caused mine it could have been several things. I have had MP several yrs. Neurotin helps the electric spikes of the nerves and lidoderm patches on my thigh keep clothing from driving me crazy. I have spinal problems too. I had a flare up of my back about the same time I had MP show its self. At that time I did have have increased pain when I went to the bathroom but that only lasted a short time.
Cold weather can make MP more painful for me too.
It took months or longer for MP to calm down. I have learned to tolerate it better. It is not as painful as it was in the beginning.
If I use the meds, patch, do water exercise, keep clothes and bed coverings away from my thighs, and do not over due physical activity for the day it is easier to cope with MP for me.
Keep positive you will find what works best for you.
MP is a crazy thing but everyday I can get up and move is a blessing.
TAKE CARE!!!

Thank you for your response Lookingup58! The neurotin seems to be working pretty well now. I have been taking it for about 4 weeks now. I know when it it time to take the next dose because I start to get the burning pains. My leg also bothers me when it is cold. I will either turn on the heater or use a blanket and that seems to help. As for it sensitivity when the clothing or blankets touch my skin, that hasn't happened in a while. If I stay on my feet all day, like I did yesterday, I feel like a 90 year old woman. I have a follow up appt with the neurologist on 3/7. I want to ask him if there is a connection with the bm's and MP. I also want to find out if there is an alternative to taking so many pills a day. I find they help but feel like I am constantly popping pills! The shot he gave me only worked for a day.

Thank you again and take care!

Hi everybody.

I finally found the new forum! I've had MP about 5 years. I was able to reduce what I'd call agony to "just barely noticeable" pain with the methods of transverse friction described in this forum by "Painfree".

I discovered them by researching the old "braintalk site" after a neurologist scared me by suggesting a transection. I've been more or less pain free for about 2 years now thanks to this site.

When I was reading the old threads looking for hope, it was scarce, but just remember, most of the cured don't bother posting anymore. They are too busy doing other things, like running, jumping and clicking their heels together. Keep your collective chin up. And keep researching. I understand there are more than 80 different causes for MP.

So keep trying to find a solution that's right for yourself.

All the best.

kellie

Thanks so much for posting and letting us know your are doing well. It is good for those of us who are still searching to have hope. I have heard of this transverse friction. I do believe it could work for some but maybe not everyone. It is worth a try and I quess you do not have to take medication, if that so? That would be a real plus to find something that is not a pill/medicine.

Thanks for your update.

Blessings!!

I started having MP when I was in the Air Force in the early 80's. Needless to say it was never diagnosed, and the doctors thought it was just a muscle strain. Every time I ran at full speed I would get a burning sensation in my left upper thigh that would last only a few minutes followed by 5 to 10 minutes of numbness. About 5 years ago I was playing softball and had the pain when I ran to 1st base. Then the numbness came and the feeling has never returned. It has been both a blessing and a curse. I haven't had the pain caused by exercise since. But I have had what I can only describe as phantom pain. On several occasions, I have been wakened up by extremely sharp pain in my thigh that is very short in duration but repeats every few seconds. On a few of those occasions, after about 5 minutes, I stated having muscle contractions in every muscle in my body. It seemed to me I was having convulsions. the muscle contractions kept happening every few seconds like clock-work even after the nerve pain stopped. The first time it happened I went to the doctor about 8 hours after it started. He gave me a drug used to treat panic disorders, and explained what was happening was sort of like hiccups. It stopped a few hours later. For the next few days every muscle in my body ached. I still get the phantom pain once in a while, but the severity has decreased to the tolerable level without the muscle contractions.
Has anyone here completely lost feeling from MP? Is there any treatment for it when it gets this far?

Kellie - Any chance you could help me locate the transverse friction reference you mentioned that Painfree had written about?

Jeeze, I thought I was the only one. I have had MP for 14 years, first few years I was told I was crazy (nicely buy that it was a psychological problem). They tried depocote ,(sp?)didn’t help tried another doctor was told basically the same thing. I let it go for years (mostly due to no insurance). Years later another doctor said it was neuropathy and I took Gabapentin for a year with no real relief. Again, I went years suffering through. The only things that have kept me going is things like Vicodan that were actually prescribed for Migraine headaches or other ailments, ( also been accused of trying to get pain meds for recreational use….God if they knew the pain.) I would stock up for use when my legs were on fire with the feeling of white-hot sharp objects stabbing my thighs.

I have been using a cane for about 10 years. It helps me not have AS MUCH pain later in the day when the pain at its worst but it is still not a fix.

Recently (February 14th) after a stroke (TIA) I was chatting with the neurosurgeon while still in the hospital, asked if I could ask some other questions and he did some “pin” tests diagnosed the MP in 2 mins, and said he new how painful it was and had the hospital give me some vicodan for relief. To come see him when I got out and we would discuss a very simple operation to clip the nerves, well I was fired from my job ( they said because of “poor performance” but it was because of the stroke and limited duties for a month). Bye bye Insurance!

That was 5 months ago the pain in my legs has gotten so bad that I have trouble functioning, getting out of bed is a problem sometimes. I cannot work. If I do not do, too much walking around I can actually sleep through the night.

I applied for Medical Assistance and am receiving it, so I have been doing the Doctor thing for the MP, heart, stroke and diabetes, I feel a little better. My Neurologist gave me Lyrica and it works a bit but I am up to 75 mg 4 times a day, It tends to put me to sleep. She agreed that I should get the operation. Medical Assistance is crap insurance and I haven’t yet to find a Neurosurgeon that will accept it. There is only one Pain management center in the state that will accept it… Its 70 miles away. Anyone with this disease knows 70 miles in a car will exacerbate the MP to the spike status.

So I guess I am looking for suggestions, I saw the posts about points to press and stretching but I didn’t quite get it, so further explanation would be greatly appreciated.

Just damn tired of the pain and inability to work and fuction.

Thanks for the ears!
Czar

Czar
You are welcome for the ear. It helps to be able to talk to people who have MP or at least know what it is.
Different things work for different people. The Gabapentin and an anxietiy medicine works for me to calm the never spikes and shocks. I have not had bad ones like I had in the beginning Jan 2003. I have the nerve sensitivity on my left thigh. I am very sensitive to clothing and bed sheets. The Lidoderm patch has help me also.

I hope you can get insurance coverage to have treatment to help your pain. I know how MP keeps us from doing many things. I had thought of having my nerve burnt where it comes out of the spine. Then the Doctor moved away. So have tabled that plan for now. I do water exercises 3 times a week it seems to help me.

Keep pursing your treatment or maybe someone here will share something that worked for them to at least help tone down the pain.

Keep us posted. Blessings to you!
Lookingup

HI ALL
Just wanted to suggest that some of you may have the same cause as myself.After 20 years of misdiagnosis of neuralgia,I discovered
a displaced thoracic rib(between the shoulder blades),my physiotherapist twisted my spine and when it clicked INSTANT pain reduction of 50%,90% by the end of the fortnight.Most days I am now totally pain-free.
Hopes this helps

Mike
I am happy for the fact you have found relief. 20 years is a long time to have MP or symptoms like MP. What a change in your life!

I have been told my MP could be my back problems. I had an operation in 1992 and I think it could be a result of cutting of the stomach muscles.

My MP is not has painful now as in the past. So that is an improvement. Also I know I tolerate it better. I know my limits as to how much I can physically do too.

Take Care and thanks for sharing.