@plbelanger

I know how frustrating it can be to wait for a call back.

It's a mixed blessing to have normal test results when you're hoping that they will tell you something. How are your toes? Some things we take for granted, so when various parts of our bodies don't work right, we come to appreciate what we do have.

I also have sfpn, and my toes hurt continually. I'm able to push down with them, but no other motion. I learned last week that I have spinal stenosis, which is squeezing the cluster of nerves that are in my spine. That may account for some of my pain. I won't know just how much until I have surgery to make space for the nerves.

When I was a boy, I remember visiting my grandparents, and in their church I was amazed by the organist. She was born with no hands, so she used her feet and toes instead, including playing the organ - playing the keys, not just the pedals.

What questions do you have for your doctor? I always have a list of things I want to talk about. Even with a list, I sometimes forget things. I could blame old age, but I've been a chronic forgetter all my life. Evernote on my phone is a real help for me.

Jim

@plbelanger Hello. I understand the mixed feelings and emotions negative test results can create....there is still an open door on diagnosis, and waiting to find out the next step can be stressful. I was once told by my Drs. office to call when the matter is more of an urgent nature (or very important to me) verses using the portal. Many times my portal message was left hanging in the air so, I learned to call on certain occasions. Good luck and I hope you are responsed to in a timely manner. Best wishes for help and answers.
Rachel

@dckuke I am also anking this question of this group. When or do you just stop with the doctors and the neurologists and just try to manage as best you can. I am at that point. I have idiopathic peripheral neuropathy and idiopathic lymphdema, I take 600 mg Gabapentin nightly and amatriplaline (can't spell this morning), but is is Elavil and for neuropathy pain. I don't even know if it works. I keep taking it thinking I may feel worse if I don't. I am a pain management patient so I am able to obtain percocets so far with no problem. I thank God for this, but then worry about the addiction. I am able to take 3 a day and sometimes a 1/2 at night. That is in the middle of the night when the pain makes it impossible to sleep. I have tried to manage without them, but it is not worth the pain. It seems to e the doctors just believe you make the best of it and do your exercise, take the gabapentin and get on with the difficulties with the neuropathy and "Enjoy hte Pain" I know that is not so. When do you do that though. I hear this is damaged and this is damaged and you won't get that back. I can hardly walk at time. Pain in my feet, ankles and legs bring me to tears and then I ask myself why do I worry about taking a pill that helps some. My ability to do things that I love is gone. I want so bad to swim in the ocean and I WILL despite the fact that once in my legs will be unable to get me out. Hopefully that is covered by the many good friends who will also be there to help me. I am pushing. I don't want anyone to think I am giving up, but what I am asking is when do I step back and acept this is the way it is and will be. So tired of being told, to do this, do that, your not doing that. I am doing this and doing that and I am still in pain and sometimes can barely walk. Would never pass a roadside test.