[Trishgels]

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