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5 Years - Started with Numbness and Tingling

I've been trying to figure out what unknown disease I had for the last five years and I feel like I'm starting to lose my mind.  I've already been checked for the basics (Lyme, b12, etc) over the years and have had a few MRIs.  I've always thought this might be an autoimmune disease as well, but my AMA tests always come back fine.  I know it has to be some rare disease that my doctors are not aware of.  I'll list my chronological symptoms over the years and how they've progressed.  Any ideas or insight would be greatly appreciated.

Started with Numbness, tingling, burning and slight lack of sensation in my toes.
A few months later it had spread to my arms.
When rolling my eyes to the top of my head, my left ear would vibrate.
Numbness, tingling, burning and slight lack of sensation has now spread all the way up my arms, legs and groin.
When I get the chills it only affects the areas my numbness has not yet reached.
Getting harder to tell when urinating and sexual performance has decreased when the numbness hit my groin.
Numbness, tingling, burning and slight lack of sensation has reached the top of my head and is moving down.
Lots of pressure/tingling in head and getting hard to concentrate, kind of feel like I'm always in a foggy state - This one is very hard to deal with on a daily basis.
Neck has become stiff and can hear 'crackling in neck'
Feels like my eyesight is getting a little worse.
Random muscle twitching in top of head (imagine clenching your jaw) and eyelids twitching as well.
The tingling has reached my chest and now I can feel my heart beat 24/7.  This one is also terrible and hard for me to deal with on a daily basis, especially when trying to sleep.
When having a bowl movement, I get the chills.  They smell is getting consistently worse and I think they are becoming smaller/thinner.
When my stomach growls I can hear the 'cracking' in my neck.

This is pretty much where I am at today.  I'm sure I missed a few smaller symptoms, but it has taken a little over 5 years to get to this point.  If anyone has any ideas or leads, I would greatly appreciate it.

2 Responses
351246 tn?1379682132
I am sorry to hear about your medical problems. Numbness and tingling that comes and goes can be due to a mini stroke or transient ischemic attack, compression of spinal nerves, Vit B12 deficiency, vitamin D deficiency, anemia, vaso-vagal attack, low testosterone, anemia, lupus and other autoimmune disorders (a normal ANA may indicate rare ANA negative lupus or a mixed connective tissue disease), heavy metal poisoning, multiple sclerosis, hypothyroidism, diabetes and panic attack. It can also be a type of seizure. If there is a headache then it can be benign intracranial hypertension too.
Of these anemia, vitamin B and D deficiency, hypothyroidism etc may have been ruled out). You may need MRI of the spine and nerve conduction studies. You may also need brain MRI and spinal tap to rule out MS. Please discuss with your doctor. Take care!

The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.

Avatar universal
Many of your symptoms are like mine:
After knee surgery (Aug 2013) I started with the burning/tingling in hips/buttocks and physio thought it was piriformis. It then spread to my back with intense burning at times, then to my fingers and toes. I get little zaps in my arms and thighs at times too. My feet often feel like they're getting cold shots of water on the soles. My GP had no idea and referred me to neuro who is still not sure and is suggesting stress-related, which I know it is not as the only stress I have is wondering what is causing these symptoms! I'm still off work recovering from knee surgery so my life is pretty low key right now and very low stress.  I sent blood work to Igenex (after convincing my GP to test for Lyme) and it came back Negative, so no one believes it is Lyme but I'm not convinced!
So now along with the daily burning and tingling of back, hips, knees, fingers and toes going on 8 months (not always each of those places, seems to move around on day to day basis) I developed gastritis which was mostly resolved with Nexium, I now wake up daily with a headache, my neck also creaks and cracks, my eyesight has worsened significantly since last year, I wake up at night feeling like my stomach/torso is vibrating sometimes, I wake up each a.m. with my hands feeling "asleep" and right hand knuckle area slightly swollen, and I lately have noticed that I feel my heart beating loudly esp. when laying down at night.
I have an MRI scheduled this week to "rule out MS" my neurologist says. My nerve conduction test was normal. My plan of action is to seem what MRI results show, if anything and then most likely see a LLMD as no one else can figure out what this is. From what I've read, a NEG LYME blood test does NOT rule out Lyme Disease/coinfections.
I would be curious as to what you find out with your symptoms as the ones I mentioned match yours. Please keep me posted. I am in Canada. Thanks DD.
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