Hello,

More than anything, I need to understand what is happening to me. I'm trying to work my neurologist to discover the cause of all these Nerve related symptoms. Here is my story.

41 year old male - All Symptoms are on the left side.

Sept 2012 - I had a Sharp pain under my left cheek. Over the course of the next two months, I started to develop a more dull, throbbing pain, mixed with sharp "electric" pains all around my cheek and upper lip. At this point, the pain was occurring on a daily basis. I had an MRI that showed a blood vessel around TN's on both sides. MRI was listed as unremarkable at Reading and by a Neurosurgeon as both sides looked identical, yet my symptoms were only on the left side. Based on my symptoms alone, NS recommended MVD. I was waiting until a slightly better time to have the surgery. After the pain became consistent, I went on 300 Mg Gabapentin once a day. It muted the shocks and somewhat controlled the duller, burning pain. For the most part, on Gabapentin, it's manageable with low level headaches daily and sore muscles from the spasms.

July 2013 - I developed a strong, burning pain in my left testicle originally diagnosed as Epididymitis. After 4 rounds of antibiotics, it did not improve. From there, the pain moved to my seat area and into the ball joint of the back of my leg. I refer to it as the Pudendal Nerve Area. The pain is severely aggravated by sitting. It comes and goes, but when it is acting up, it is quite painful. My Neurologist ordered a complete Spinal MRI w/wo contrast. It comes back perfect.

August 2013 - I developed a strong, burning pain in my Sciatic Nerve from my lower buttock through the back of my thigh. I also developed sharp pains on the bottom and shocks on the top of my foot. Shortly after, I developed numbness/tingling in Femoral and Peroneal Nerve areas. I also start to feel like I have a sandbag on my thigh when I move. My Neurologist does a Nerve Conduction Study and EMG. She triples my Gabapentin. I only go to 2 x daily and have adverse affects including the inability to concentrate/focus and I become severely depressed to the point of being suicidal. While the additional medicine helped my TN disappear and my PN get better, it was not worth the adverse affects.

Sept 2013 - She schedules me for a follow up in a few weeks to discuss the test results. Her diagnosis is Paraesthesia. Between the testing and the follow up, I start having similar problems in my left arm. The sandbag feeling also occurs in my arm along with soreness. I have no trouble moving it. I would almost describe it as what I imagine it would feel like if your tendons shrunk and you were having to stretch them out. I also start having problems (at night) all over with skin sensitivity that is very uncomfortable when touched by clothing. It has a stinging/slight shocking feeling to it. She puts me on Lyrica 2 x daily, Gabapentin 1 x daily and schedules two pages of bloodwork.

October - At first the Lyrica/Gabapentin works great and I finally feel better. The bloodwork comes back. Everything looks good, A1C, B Vitamins, etc. My Vitamin D is at 17 and she puts me on 50K D2 once a week. After a few weeks on Lyrica, I was starting to feel foggy with the inability to focus and I had blurred vision. I stopped taking it yesterday. My head is a lot clearer, but my vision is still slightly blurred. The pain, tingling, numbness in my arm and leg are the worst they've been since this started.

Today I am at the point where I am waiting for the next shoe to drop. This has been a whirlwind and I'm struggling to keep a positive outlook. All my life, I've had severe allergies, food allergies and GERD. I take Proton pump inhibitors and attribute my low D to it more than this. The last 8 years, I've had super high triglycerides (770), but I've modified my diet to get them down (400). I need to recheck them as I've lost weight and have cut out most carbs and sugars in another diet modification. I was diagnosed with high blood pressure last year and started taking Diovan about 1 month before the TN episode. I've wondered if this is vascular or even autoimmune. I've also wondered if whatever is causing this could also be an aspect of my TN. I no longer want to have the MVD until I get a better understanding of what is going on.

I'm not sure where else I should go or what conversations I should have with my Neurologist. Any suggestions you may have would be greatly appreciated.

Thank You.