Need to share story and get advice

[RhinoCrasher]

Greetings everyone! My name is Jeff and like the subject says, I wanted to share my story so far and get hopefully some advice from the group here. WARNING: This post is going to be long; apologies in advance.

I am a 38 year old male, currently undiagnosed, however I was told this Tuesday that I "clinically present" with MS or a similar auto-immune disorder affecting my nervous system. I am awaiting scheduling of an MRI with contrast of my brain and nerve conduction testing. Until then, I've turned to this community for support.

The internet is evil. Every search you do looking up weird symptoms you develop and instantly good ole' Google tells you you're dying. Okay, I may be exaggerating, but that's how it feels. It all started March of 2014 when I woke up and couldn't move because of severe lower back pain. I scheduled an appointment with my PCM and 1 MRI later they discovered that I had 2 herniated discs at L4 and L5. I get referred to Neurosurgery and Pain Management. The surgeon recommends injections and a brace first as it isn't bad enough to warrant surgery; and I'm fine with that. As time progresses, it no longer becomes just back pain, but I develop mild peripheral neuropathy in my feet. It basically felt like I spilled acid on the tops of my feet. Pain Management helps by giving me Gabapentin in addition to the tizanidine and Percocet for my lower back. The gabapentin also took care of the night sweats I was having.

I then started to experience these weird, electrical shock feelings whenever I moved my eyes during the later hours of the day. It kind of feels like I hit my funny bone, but from my head to my extremities. After the first time it happened I mentioned it to my Neurosurgeon, but he was not concerned as it only happened once. Then it happened again a few months later. Now it happens quite often, and is often triggered by sharp sounds. It drives me crazy at night as it is quiet, and as the house settles and will creak, I feel the shocks and see a "flash" in my vision. Weird, right? Nothing when I put my chin to my chest though. Had that checked a few times. Nada.

I was also having sleeping issues and had a sleep study conducted at the end of the year. I snore horribly and would occasionally gasp at night (my wife witnessed these of course) so that lead to the study. I did not have enough apnea events to warrant a CPAP, however I did have some "spontaneous arousals" with "sharp activity" that caused concern with the sleep specialist. They ordered a sleep-deprived EEG to check for epilepsy and it was normal. Now I'm on Ambien to sleep better, and Provigil to stay awake during the day.

While this is progressing, every internet search of the symptoms I was feeling led to MS. I also stumbled onto this site, so paranoia set in and I brought my concerns up to my PCM, and asked for a B12 test hoping that would be the problem. He agreed it was a good idea, so the test was ordered as well as a referral to Neurology. When the test came back it was normal. As in almost right in the middle (501 in a 211-946 range) so that was a bust. The only abnormal result was my white cell monocytes were high (15 in a 2.0-9.0 range) so they wanted to retest later. I ended up having a few retests (separate illness and procedures done; fun-times), and each test since mid-May the white cell count has been high. I'm still awaiting results of my latest draw I had on the 17th.

Over the past year my symptoms have worsened. They seem to come and go, but I’ve been having my latest bout for about a month now. I’m also experiencing weakness in my arms, numbness and tingling, burning neuropathic pain in my feet, electric shock feelings in addition to sleep problems. At the moment my feet are horrible. My daily routine after work is to soak them in cool water with menthol epsom soak, and gold bond powder is my friend. At first I never imagined everything could be related until I saw the Neurologist. He also made note of spasticity, clonus and exaggerated reflexes; even wearing my boots.

So now I wait to schedule an MRI, nervous as to the outcome. In the meantime, I just needed to get this off my chest. I haven’t told many people as there is no diagnosis, only symptoms and questions. I hope to get those questions answered soon!

Jeff

[Panther123]

Hi Jeff,

My name is also Jeff and I understand how you feel. I have been having some issues lately too that seem to indicate MS, but of course it could be something else like B12, lyme, etc. I have not had any tests yet. Tomorrow is my first appoint with my GP. Now have sciatica type pain so bad almost could not walk this morning and it was hard to put on pants. I am having more problems with cognitive issues than anything. It is so frustrating.

Anyway I also have not told family yet event though my mom and sister have MS. Hope things turn out good for you and it is not MS.