Hello, everyone. I'm new to this forum and am hoping that I will be able to communicate with others who suffer from sensory motor PN. Currently, I am extremely frustrated because I feel as if my doctors are doing a little here, a little there, with another test scheduled in 3-4 wks., with a follow-up in another 3-4 wks., etc. I feel it best to tell my story and see if anyone has any suggestions.

This all started nearly 3 yrs. ago with 'crawling' sensations in my feet, followed by extreme burning, pain when walking, and trouble standing for long periods of time. I ignored it b/c I had to complete undergraduate school, sell my house/move, and begin law school. During and after my first year as a 1L, it got worse, to the point of only walking to/from class. First my doctor suggested better shoes and prescribed Naproxen. I endured, with it progressively getting worse. By last August of 2009, I returned to the Dr. and began a never-ending tour of doctors: orthopedic specialist, orthopedic surgeon, sports medicine doctor, podiatrist, psychologist, nutritionist, physical therapist, physiatrist and endocrinologist. By March of this year, I became wheelchair bound, and all concluded I had RSD, prescribed Neurontin and Vicodin, then sent me to a rheumatologist, who then sent me to a neurologist (finally). A NCS/EMG showed widespread damage, so I was put on Cymbalta, as well, and was told I had sensory motor PN. Gluten-free diet and aspirin therapy proved unsuccessful, and symptoms progressed. Was sent for 2nd opinion with another neurologist, and to a pain clinic, along with a new family doctor to coordinate everything. Stopped taking Cymbalta, began taking Lyrica, with moderate relief, but short-term. Was told it takes time.
Another NCS/EMG showed same damage, which has gotten worse in both hands and feet. MRI, lumbar puncture were both normal. B12 was low, so began injections for 2 wks. and am now having one per month. Began taking Valproic Acid and Pristiq, on top of everything else. Next, I will have an Evoke Potential test in about 2 weeks, then an appt. with a neuromuscular specialist. Another neurologist specializing in NP pain recommended Methadone (apparently, it is now prescribed for PN), which family doctor will not prescribe, and suggested possible nerve stimulator in spine after all test results come back.
In total, I've probably had about 80-100 vials of blood taken, (literally - I lost count), and every test takes 3-4 weeks to schedule, then a follow-up, then more bloodwork, etc. Meanwhile, no one addresses the fact that nothing eases the pain in my bones (they feel 'broken') or the stabbing knife-like pains that persist, and that I experience Hermittes syndrome beginning in my feet and ending in my torso - all while feeling the bee stings, squeezing, burning, itching, stabbing, etc. My muscles twitch and spasm all the time, markedly throughout my body, which is very strange, and my family says that when I sleep, my feet twitch and jump all night long. The worst pain, in fact, is always at night.
What is going on??? What could this be? What more should I do? What tests should I ask for? Does anyone else have this condition or know of anyone who does? Are there any doctors out there who specialize in this?
I'm truly frustrated and am trying to get through my last year of law school. I have to have someone help me with everything, I have to crawl up stairs to take a shower, I can't drive, and I'm only comfortable in my hospital bed at home now, while watching videos of classes because I only attend about 1/3 of the time due to pain. I am miserable, yet manage to stay positive because there has got to be something more that can be done! (I initially had 'situational depression' when first began using a wheelchair, but have been handling all of this surprisingly well since, according to my friends, family and doctors). I remain hopeful that somehow I will walk again and find relief.

I would appreciate any help that anyone has to offer. As well, I thank anyone who may offer any support, advice, or just prayers!
Sincerely,
Trish

Hi Trish

I have had some of the same symptoms you have stated but my EMG came back normal.

I have the twitching and pins and needles feeling which has now gone to my face (started in my feet, could feel it rise to my legs & arms and now is in my face), and the doctors don't know what to do.

I also have a HIGH Vitamin B12 count in my labwork, ever heard of that?

I wanted to say hello and there is a book called "My test results are normal now what" or something to that effect...... it discusses auto-immune diseases which I have "Hashimoto's" - endocrine related.

I'm beginning to think that going to another country might be the thing to do because so far the USA doctor's can't figure it out!

Just click on the following 'blue':
http://neurotalk.psychcentral.com/forum20.html
Be sure to read the threads at the top, and the sticky's [important information] next, the read about Pn folks and see if you've things in common.

First off tho Tish? Did you have a bad cold or flu a few months BEFORE this all started? Such flu's can trigger other actions that can cause other types of PN.

I understand your state of mind - I was without a clue when I got a whopping progressive type of PN myself! Check out the PN forum and dive in, I know folks are kind there! - j

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great and caring fellow members here to assist you. Our shouders are here for support in many ways. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

Please let us know, so we all can try and help you?
YES! Frustration does come with this territory.... No doubt about it.
Just keep at the attempts to get DIAGNOSED! It could save your life. I know it did mine.
This is a good read, especially the 'charts'...look and realize that our issues aren't THAT easy to really diagnose, let alone treat. :
http://www.aafp.org/afp/980215ap/poncelet.html
Rightfully you are scared, but being scared and SMART is a heap better then being scared and going: 'OK doc'. Even tho you don't know what you have? You've got to learn how to ask questions to get the doc on track for YOUR diagnosis! Start out with this 'stickie' and work your way thru the 'learning curve'. It's not easy? I'd started out totally web-ignorant and JUST followed my own instincts-turned out I'd Truly something wrong! While there are times I wish I could be ignorant? I'm FAR better off and safer for all the 'knowing', a lot of which I''ve found from folks here and research.
Do let us know how you are faring, PLEASE? This is not-fun stuff, and we help each other to cope in many ways... One being? THAT you are NOT alone! 's till later, better hear from you, please?
Sometimes, I think that IF we all beat our heads against walls simultanesouly? {sp?-Who cares?} we'd somehow make an impression in the medical world.... Sure would like to THINK IT'S SO! - 's a lot! - j