Hi guys,

I have taken some time off from the forum and am happy to have the strength to get back on today and update you guys, get some insight, and talk about my recent appointments.

Sorry for the delay, this past week was just a rollercoaster of emotions and symptoms for me! I have had pretty severe neck and spine pain that was likely brought on by being in the car for extended periods of time this week. I forgot how bad that made me flare! I can feel every break in the gas and every curve throughout my spine....

So Monday I had my first visit with the neuro. Phew....that was quite the disappointment!!! Still recovering from his lack of empathy and arrogant attitude, but I'll move on and get to some positives. He said there was no neuropathy (He must have decided this due to the short physical exam and explicit placing of me in categories such as "you are too young" "you look so healthy" "you must have tense muscles from lack of sleep"). I have had plenty of sleep, it's just the problem of getting to sleep. I am either in pain or my feet and hands are on fire, causing me to drift off in the wee hours of the night. He did not talk about any of my symptoms, nor would he even let me explain any of them. I thought this odd, but then again all docs are different.

He went on to tell me this was related to my cervical spine. He looked at my brain MRI, agreed it was normal but also said I had a very straight neck and this could be causing some of my problems. Mentioned it could be spinal stenosis, I do not disagree. But he also rudely said that muscle relaxers should "fix" me in FIVE nights, yes FIVE. What a JOKE. Prescribed me to the muscle relaxers, scheduled a MRI for five weeks later, and sent me on my way. I made sure I explained I was exposed to ticks the two summers prior, so he also ordered blood work for RMSF(rocky mountain spotted fever) and another infectious agent I cannot recall off the top of my head. I was pleased with this. He also did labs for zinc and copper.

In the meantime I scheduled an appointment with my primary. What do I do? Set around for yet another month feeling helpless and that I am not actively doing anything to improve my condition. My primary was great with me. He ordered me and EMG/NVS that will take place this Wed! WHOO HOO! He is still thinking PN. I am just so confused!! He did prescribe me to a steroid pack, which helped my neck pain in the past. It is not ideal, but I am willing to do anything at this point to get some relief.

Zinc and copper=normal. Bombshell news on Friday evening: The neuro office called me letting me know that my bloodwork for the RMSF came back either low low positive of high negative. I was so shocked that I wasn't comprehending clearly. They want to retest in two weeks. I will call my primary in the morning to see if they can order me the test and I should probably follow up with the neuro with more info on my result. I am very scared about the RMSF because if that is it, I have gone anywhere from 6-10 months undiagnosed. What are the repercussions of this? Has this moved into my nervous system? If anyone has additional info on this please please share!!

If it has caused PN will this show in the EMG/NCS on Wed? Will the stenosis possibly show in the EMG/NCS? I may want to share this story with other support groups, so if you have suggestions please send my way. Thank you all so much again for your continued support through all this!!

Sincerely,
Emily