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!

[Genkin]

Are you taking any medications.  I know you have undergone many tests.  Have you had vitamin B12 and D checked?  I have similar issues/situation.  I am reading a book called the Wahls protocol.  It’s all about nutrition and overall wellness.  Might be something to look into especially if the drs are at a loss.
There are many nitro necessary  both nerve conduction and circulation.  B vitamins, CoQ10, sulfur, vitamin d and K2.  I have some knowledge in healthcare and nutrition both.  Not taking any cholesterol meds?  Also,  consider food sensitivities.  Sounds strange but not that uncommon.  

Thinking outside of the box and wishing you well.
J

[ozzydee]

Hi to all of you.  Just in case you don't read to the end of this article...may I just say: GET YOUR THYROID LEVELS CHECKED - it could be as simple (and as overlooked as that), and hopefully it'll save you a lot of angst.
Now my story:
I too had very similar symptoms to what most of you have mentioned and had mentioned these symptoms (of feeling cold, having brittle nails, brittle hair, cracked lips, mouth ulcers, extreme tiredness, numbness and tingling, so often that I was starting to sound like an old record. I had one Dr who thought it was all in my mind, one who thought I was depressed, one who thought I had nerve damage, one who thought I was just an overwrought Mum and Wife, etc, etc, (you probably all know the run around),  but none of them thought on to do a simple test for my thyroid levels. Many Drs and a few years later, I had just about given up on finding a "cure" when a blood test came back that I was severely anaemic.  That was treated with both injections (that didn't work) and then iron tablets, which did help boost my iron levels- but I had to keep taking them.  However the cause of my nocturnal parathesias (sometimes both arms and shoulders etc...completely numb), was only discovered when I awoke one night not being able to breathe properly...I just felt like I couldn't inhale enough oxygen...it was horrible. I used to dread going to sleep for I didn't know how much of me would wake up!  Anyway, back I went to yet another Dr who tried to convince me that it must have been a panic attack....fortunately for me though, he decided to see if my thyroid levels were out of whack, although he didn't think that was my problem...because I didn't look like someone with thyroid problems!
Anyway, it was a Eureka moment in my life....for the results came back and my thyroid levels were completely off the scale. (Hypothyroid...so not enough thyroid.)  Thus he put me on thyroxine and I now have my life back.  Prior to that I was suffering with being extremely cold, lethargic, tired all of the time, had a degree of "mental fogginess" gained weight with amazing ease.  I just wish I'd known about thyroid problems (30kg) earlier, when my children needed "me" to be more present.  I feel that for about 10 years of my life I was in a "fog".  Fortunately I was only working part time....but just trying to keep up with a "normal" routine was extremely exhausting and put quite a strain on my marriage as well....although, happily, we have survived.  I just hope that all of you here can also discover what ails you....if it is your thyroid, then please know - there is a cure.

[twingst]

My wife has the same symptoms and we are both very worried.  She is 34 years old.  She was dental hygienist, until couple weeks ago; she started having burning sensation on her back neck/shoulder and within couple days, tingling and numbness transcended to the whole body.  She immediately took a break from her work, but symptoms continue.  She says her body feels like a cement.  She can neither read books to our kids, nor carry out normal activities; her arm would become numb, if she is to hold something for a short period.  She would wake up from her sleep, because her legs would fall asleep at night.  The feelings would worsen at night time, or right when she wakes up.  

She is going through a severe depression, and is crying all the time.  

I do not know what to do.

Were you in any kind of dental related occupation, which requires neck/shoulder muscles?  If so, was worker's comp able to cover the medical costs?  Hearing your experiences in dealing with this symptom would help us greatly.  

I hope everyone is doing well, and I wish to return the same favors to everyone soon.

[SEDeadlimbs]

Hi, I am here trawling the net to see what i can find after yet another frustrating visit to the doctor. Chad, thank you for sharing your experiences. I have suffered with dead limbs at night for over ten years!! I initially put it down to poor circulation until a nurse who i mentioned it to, freaked out and asked me to see a doctor. It used to be just my legs i.e. from the knee down going completely dead, no feeling nothing, dodo dead!! I would wake from deep sleep, heart pounding and in sheer panic, crying and rubbing the leg until some feeling returns. When in this state, I cannot stand on the leg. Over the years, it has moved to my hands, sometimes just fingers sometimes both hands at the same time but with the years and the fear of it happening at night, I have learnt to sleep relatively lightly waking up frequently such that most times, I wake up just as the numbness starts to creep up the limb, shake it awake and go back to sleep until it happens again. I can no longer sleep fully on my right hand side and have to have small pillow between my knees if I sleep on my side. I have seen different GPs been referred to the same neurophysiologist, have had nerve conduct tests (think that is what they are called) but zilch! My GP today more or less said don't know and don't know who to refer you to. All he could offer was painkillers used for treating a certain nerve problem which i declined. I want to know the cause and not have a sticking plaster to hide it and save him having to scratch his head each time i turn up. It is so comforting knowing that there are others out there with a similar condition. Please please let me know if anything does work for you or the doctors take us seriously as this is certainly not in my mind or made up! I sometimes am reluctant to go to sleep because I don't want that fear that you experience when you wake from deep sleep thinking I hope the feeling returns to my limb or finger or whatever is affected on that occasion.At least he has agreed to refer me to a neurologist.Lets hope he/she can do better.

Regards, A

[soniye]

Also I forgot get  checked for motor neurone disease.

[soniye]

Try seeing a cardiologist and vascular surgeon and ask to get tested for Thoracic Outlet Syndrome. Another thing you can get checked from other specialists are ur kidneys and phrenic nerve. Get your blood sugar tested too. Could also be a very minor stroke. In this casespine/neck issues, diabetes, ms seem the most fitting. I'm not a doctor.

[Jenniferbrown84kiwi]

I'm really sad and frustrated feel the same. Went to hospital as have central disc bulge but over course of few weeks have had dead hands legs arms feet and they say it can't be linked to the l4-l5 bulge and say although it's central it's not pressing on the nerve. They did MRI said MS was bot visible or tumors had MRI on lower back and head and neck they found nothing other than the disc bulge they said was minor. I'm a 27 year old one minute had my life ahead of me now completely clueless. I get tingling also all over and urine retention and leakage minimul it's like my body doesn't know what to do. I have definately lost some senses as some areas are not as sensitive to touch. I also get tired a lot. Any answers?? How do I find out and get a diagnosis? They have tested blood, MRI on parts. Just feel helpless. My e mail is ***@**** if anyone can help  or chat x  

[mcm61]

Checking in, just read you posts. you are describing me, how are you?

[JBPT]

Gus, T4 syndrome or TOS? with plantar fasciitis ?

Chad, given you've rulled out my initial thoughts, I'm thinking more spinal  related...USpA or possibly Ankylosing Spondylitis(?) which can affect upper and lower body through neural networks arrising from spinal segments. Basically an inflamation or stiffening of the spine affects the nerves that project out of the spine and into the limbs. Just a thought. It's been years since your post, but maybe you or someone else will find this helpful.

JB

[Gus33]

Hi Chad. I am from Brazil. I have had the same symptoms as you had. I have paresthesia on both hands at night. Also, the lower part of my feet hurt a lot when I stand up for a short period of time which is very strange because I am only 28 years old. I have had a persistent headache added to that. I've seen several doctors and the only thing they found was a gastritis.

To all the people who posted here: Let me know if you find solutions to your problems.

Best wishes

Gus

[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

[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

[richardp]

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

[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.

[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.

[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]

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!