Limb paresthesia at night, neuropathy during day - worsening. Please help!

[chad333]

Hi all! Well, I have been scouring these forums for almost two years now looking for answers and, finding none, have finally decided to post my own question in hopes someone out there has a clue!

For going on two years, I have had worsening symptoms that seem to fall into two buckets depending on time of day.

During the day, I find that my feet, legs and sometimes hands begin to quickly feel like they are "burning" or "icy hot" as some have described it on these boards. My legs muscles seem to feel tight and achy and I find that in my office at work I am constantly standing up and moving around, squatting up and down, and resting my feet on a small heater under my desk to try to mask these sensations. The pain gets progressively worse throughout the day. Also, my arms/hands sometimes begin to feel this way also so that I am shaking them out and rotating my arms in circles trying to get rid of the feeling. Also in the last few months, I have found that I have the burning/achy feeling in my upper legs/inside thighs and that my testicles/scrotum seems to always feel cold while the rest of torso/groin area is perfectly warm!

At night, once I finally make it into bed, these sensations seem to subside but I wake up almost every night with one or more limbs completely "asleep" like paresthesia (as I have come to know the term). Often it can be both arms and hands, recently it has been an entire leg along with an arm or two. I wake up in the middle of the night and have to walk around the house to restore the bloodflow and feeling, which does happen quickly. I mainly sleep on my back and while I do have minor neck and lower back pain now and again, generally speaking my back is okay.

I have seen several neurologists over the last 20 months and one spine specialist, all with no specific help. The latest one has put me on Neurontin and I am taking up to 2100 mg per day which has seemed to take away some of the foot burning feeling during the day but that is about it.

I am a 35 yo male in decent physical shape and not overwieght. I do not smoke but do drink alcohol which I am aware can be both a cause/aggravator of PN. I have had a full head/spine MRI last year all negative. They have given me every known blood test, all negative. I had a nerve conduction test last year, negative. I have an EMG scheduled for next week but that seems to be the last test I have yet to complete. I am going to beg for one more head/upper neck MRI to make sure there are no new signs of MS because that seems to be the only thing left that this can be based on the symptoms. I have taken a slew of tests that a rheumatologist ordered, all negative.

Normally I would have just accepted the diagnosis of my neurologists that I have some undetermined peripheral neuropathy but what about this crazy limbs-going-dead-asleep at night thing? I mean, two nights ago I woke up and my entire right leg PLUS both arms/hands were dead asleep! The neurologists and numerous chiropractors all are at a loss!

(Amazingly, as I am sitting here typing this on the couch, I have to get up and walk around because my left leg/buttock just went to sleep on me in 5 minutes or so).

I am scared because the symptoms are getting more pronounced and happen faster and stay longer with each passing month. If you read this far, thank you. And if you have any insights, similar symptoms, ideas, I would love to hear them. Cheers, Chad!

[rainsummer]

Have you been tested for lymes disease?
  
Here is a good link on PN and you will see some forms are genetic...Inherited forms

http://www.ninds.nih.gov/disorders/peripheralneuropathy/peripheralneuropathy.htm

good luck!

[chad333]

Yes...Lyme disease was negative.

I guess my main question is: has anyone ever heard of PN causing multiple limbs to "fall asleep" like this at night or am I facing more than one problem here? My neurologist thinks the two are unrelated as do numerous chiropractors.

The problem is: if my PN (god knows what is causing that) is not also causing my limbs to "fall asleep" every night, what is? And why does it seem to be happening more often and to greater parts of my body??

Thanks...

[rainsummer]

Yes PN can cause numbness and PN can be worse at night.

Symptoms of peripheral neuropathy may include:

numbness or insensitivity to pain or temperature
a tingling, burning, or prickling sensation
sharp, burning pain or cramps
extreme sensitivity to touch, even a light touch
loss of balance and coordination
muscle weakness
muscle wasting
paralysis


I have PN and mine is worse at night.

[bophisto]

hi u posted to my 'worried about ms'--Yeah it sounds like I have the same thing. I wish there was something to get rid of the numbness at night. It's driving me crazy.

[richardp]

What about Guillain Barre Syndrome - did you have a any gastritis or pneumonia recently ? How old are u ?

[chris1776]

   When I read your story (symptoms), I said to myself, "That's me"  Exactly what I have to a tee.  Has been going on with me for about 9 months now and getting worse, my doc thinks Lymes Disease even though my blood test and spinal tap came back neg for Lymes.  I am on Neurontin as well (1800mg a day).  It helps somewhat but the pains are still there eating away at me.  Let me know if you find something out.  I have a question for you.  You were not possibly in the service?

Thank you very much,

Chris

[MelissaB17]

I, too,  have these symptoms.  Did yours appear acutely or gradually?  Do you experience any pain now that some time has passed since your last post?  Did you have any trauma or surgery prior to the appearance of your symptoms?  I have had many tests as I am sure you are going through this process as well and the findings for me were postive and high ESR (Sed Rate), high C-Protein.  No MS, Lupus, Myeltis, and I too had the brain MRI - negative, MRI cerival spine - negative, CT scans with contrast of chest and abdomen - negative.  Negative for Rheumatoid issues, however, now I have pain.  It started in my upper arms and thighs and seems to be progressing throughout my system.

I appreciate your sharing your story, and if you find an answer I'd appreciate your insights along with anyone elses. I am now on a gabapentin as well and have been ill now for 6 months with this.

I offer you encouragement to keep looking for answers and keep fighting.

Good Wishes,

Melissa