Newbe with a message
 

Hello everyone! I googled groups and here I am! Wooohoo!

Here is the readers digest version of my story: burning feet sent me to my GP for a third time 15 years ago. He told me, for the third time, the burning was because of the high heels I was wearing. I believed him the first 2 times because I did wear high heals at least 10 hours a day and knew my feet were abused, but this time it felt like so much more to me. I went to a different GP who after a simple blood test said I was a full blown diabetic undiagnosed for a minimum of 2-3 years due to the extremely high levels PN in my feet and lower legs. (he had ordered an EMG as well) I then went to a neurologist to try to manage the pain. We tried at least 10 different meds and almost a year later I suffering from intense shocks. (It was like a wire with a damaged spot. When the electricity went down the wire it had to jump over the bad part and when it reconnected with the undamaged part further down the line it sent a jolt through my legs that had me jumping and jerking in moments of excruciating pain. These moments were quite often and 24 hours a day.)

He finally tried a combination of Neurontin and Cymbalta. He started at low doses of each until the pain was controlled. I have been on that for about 4 years now and am happy to say that though I am not pain free it is a vast improvement from before. I am at 800mg of Neurontin 2x a day and 60mg of Cymbalta 2x per day.

I now tell everyone that I know that if they have symptoms they KNOW are not right for their body to insist on full blood panels. Much can be seen from just that. Doctors are not infallible and can miss things if they don't recognize the symptom. I encourage everyone to google their symptoms and be their own advocate!

Make it a great day everyone!

Giant squishy hugs to everyone who needs one! There is hope if you look for it hard enough!!

:yahoo: Deb

Welcome to NeuroTalk, Deb.

Please visit our PN forum and see if perhaps there are some other things you can try to improve your situation.

We have a regular forum for discussions and a Subforum with informational postings.

http://neurotalk.psychcentral.com/forum20.html

http://neurotalk.psychcentral.com/forum119.html

There are several things you can further explore to try to heal your situation, so you will not need to rely on drugs so much.

Hello and Welcome!
 

Hello Deb and WELCOME to Neurotalk!

I see that MrsD has given you a couple of links to get you started. :)

Please feel free to roam around and join in anywhere!

You have found a wonderful community full of very kind, caring, and compassionate people who share a wealth of knowledge and understanding.

I look forward to seeing you around the board!
:)
Abbie

Our biggest problem was not knowing what to google. The symptoms alone did not give the diagnosis, and for the family member we started the search 15 years ago in the early days of the World Wide Web. But eventually, terms were given that led to diagnostics.

I love medical mysteries - a TV show. Many people's stories are like that. The solution usually lies with a doctor that actually LISTENS. Our family also found a doctor to finally run tests. Like in the Medical Mysteries or Mystery Diagnosis - doctors start with a blank piece of paper and ask questions.

Now-a-days doctors have signs in their office that you can talk about only 1 problem per visit. But, but, but..... what if the TEN problems you have are all one underlying pathology?

What is our health care system coming to?

The book on this website - http://www.itsnotmental.com has an excellent foreword by Dr. Robert Fredericks, M.D. which you can see on-line on Amazon. He addresses the system failure.

Welcome aboard!
 

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. There are a great number of fellow members to assist you. Just let us know if we can be of any help.

My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene :hug:

Thank you for all the warm and fuzzy greetings! I hope to see you all around the boards as well.

In response to Jasper, I did not mean to insinuate that we were not capable of advocating for ourselves and our families, so I apologize if it read like that. It is just that so many of us look to medical professionals as better than we are and are therefore afraid to be a bit more demanding and aggressive to be heard. I was in the past, but am no longer. My son WAS a mystery diagnosis for six years!! The day I stood in the pediatricians office and told him I was not leaving until he gave him a referral to the Mayo Clinic was the day I hit bottom on my desperation level to help my son. I have not looked back since. I still feel terrible for all the years he suffered without help which is why I do my best to tell people I meet to fight until they get the answers. I send my prayers and well wishes to your family. Fight the good fight.

Hugs,
Deb

Deb, I took no offense. Just sharing that we, too, goofed for some years. We have regrets. That is why I share. We are comrades in arms sharing our stories.

hi deb and welcome,

your message is a good one. sometimes i don't think drs look for the big picture. they're too quick to say it's hormones, in your head, or depression etc.

how's your diabetes doing?
i'm glad the meds are helping. it can take time to try different meds and doses before something works.

hope to see you around NT.