Seeking info, support, anything....

Brain and nerves
1

I am going to apologize now for how long this is going to be.  Back in late Winter, early Spring 2016, I developed a pins and needles feeling in my feet.  I also felt like I was wearing a sock on my left foot that was not there.  The pins and needle feeling would come and go.  It caused me more anxiety than anything. I saw a neurologist in May 2016 and it was discovered I had a Vitamin D deficiency.  I was given a script for Vit D, take a supplement every day, and that fixed the problem.

We now jump ahead to January 2018.  I had at at least two occasions where my left foot kinda felt numb.  One time I was outside and it was VERY cold.  I soaked the foot in warm water and fixed the problem.  This happened again while I was INSIDE the house.  Again, I put my left foot in some warm water and it was back to normal.  I didn't give it much thought.

I was taking a shower about six weeks ago and fell out of the tub.  Now, I don't remember if I hit the side of the tub and THEN fell on the floor of I fell right on the floor.  In any case, I landed on my rear end outside the tub.  I did NOT hit my head.  The fall was kinda hard.  I had no back or leg pain right after the fall or since then.  The only thing I had worth noting was a pins and needle feeling in one of my left fingers for a few minutes a day or two after the fall.

We now move to three weeks after the fall.  I have been having these intermittent burning sensation/electrical shocks in my feet.  The pain level is about a "1."  It has NOT affected balance, walking, or strength.  However, it has done a number on me mentally.  I am so freaked out by this.  The anxiety has been so bad that I've lost about 20 pounds from not eating.  I haven't slept well.  The sensations are not constant and, thankfully so far, do not occur at night.

I have done a TON of research online about diabetes and neuropathy.  My PCP ran a basic metabolic panel for my yearly physical last month.  Glucose came back at 99 (the extreme high end of normal).  I also had an A1c done and it came back at 5.4. 

Vitamin D and B12 came back normal.  TSH was normal.  CBD Diff all came back normal except for ABS Mono.  The high range of normal is .86.  Mine came back at .9.  The doc was not concerned.

Last week, I go to see a neurologist.  It's the same guy I saw back in 2016.  He put me through a basic neuro test.  The one thing that I should note is that there was a test where he poked my fingers with a pin.  I could REALLY feel how sharp it was.  However, as he went down my legs, I could feel the pin, but it felt blunt, for the most part, below the knees on both legs. 

I want to take a moment right now to say that my feet can feel the differences in surface texture (e.g. carpet vs. wood floor) and can sense temperature differences just fine.  If I am walking outside and step on, say, a pine cone, I can feel it through my shoe. 

Last week, the neuro ordered these tests:

ANA by IFA Screen (Negative)

Folate Serum (Normal)

Vit B6 (Normal)

Sed Rate (Normal)

Consequently, he has now ordered his 2nd tier of tests:

Complete Metabolic Panel

ANTI ENA ID

ANTI SSA BLD

ANTI SSB BLD

HEP REMOTE PANEL

HEAVY METALS SCREEn

I have not yet taken those blood tests.  I had a new development today where my right arm felt 'warm.'  That is the only way I can describe it.  I had this same sensation in the right for part of a day about two or three weeks ago.  I also have some pain in my middle back a little below my neck. 

I don't think that either my PCP or Neuro believe that the fall in the tub is in any way related to what's going on. 

Guess what I'm looking for is some feedback or, perhaps, just support, or thoughts on this whole situation.  Thanks.

2

sorry to hear you have been through the wringer....most of us have similar experiances and the operative word is FRUSTRATING.

If  you dont get any satisfaction consider a Lyme  disease test...I suffered with  neurapathy for 10 years before I was diagnosed and now struggle to get back to normal.Theres no guarantee thats your problem but at least rule it out.

3

Thanks for responding, Tara.  Should I expect this to get worse?

4

I have had pins and needles, numbness, pain and burning sensations for years in my shoulder, elbow, hands and borh arms.  It was due to injuries.  There is not a lot that can be done accept wait for the rest of your tests.  Even then, there is little you can do for neuropathy if anything at all.  Since heat worked for you before, I would kee trying this.  Intense sunlight reall helps me,

5

It's an awful situation to be in. Gabapentun has helped me a lot...but Im still operating between 30 and 70% of what I was.

 

6

Did the neurologist order an EMG test to be done? If not I would ask him about it. That's one way mine discovered I have peripheral neuropathy in my feet. I have a numb feeling in my lower legs and my feet feel like pins and needles sometimes and they are pretty much always cold but get worse in the winter. This has also caused me to have a lot of anxiety. I can walk pretty much okay but it has gotten a bit worse. Good luck with it.

Ken

7

I hate to say this but...well....theres a definate possibility it could get a lot worse....if at all possible you have to identify the cause and do everything you can to stop or slow the progression of the damage. Nows the time to be very good to yourself and take extra care with your diet....inflammatory foods appear to make things worse, and inflammatory foods are, you guessed it, EVERYTHING we love to eat. At the same time its important to build up the nerve fibers so vitamin supplements are a good idea as long as you clear it with your doctor. Im not a huge believer in vitamins...I htink you should be getting vitamins through your  food but food is so overly processed nowadays who knows what we many be missing?? B12 and B 6 are crucial to nerve development, I take fish oil and alpha lipoic acid and tumeric ....these are all over the counter and cheap, so  its worth a shot. I feel they have helped maintain things for me, dont expect an over night cure. Theres a supplement called MetaNX which is supposed to be a super duper B6/B12 supplement, its prescription only, cost me 175 dollars for a bottle {lasted about 2 months} and its supposed to be very good for people who may not have the ability to metabolize vitamin B6 or 12 which can happen with age or screwed up immune systems. I felt it was worth a shot...and I think it contributed to my stabilizing my condition.Im personally still fighting Lymes, so until thats cleared I wont really know how far I can go rebuilding my nerve fibers. But Im grateful for every good day and make the most of it.

Worst case scenerio make plans to {just in case} to arrange your life in such a way as to make your days as easy as possible.I find I make sure I do everything I have to do before noon, before the exhaustion takes over.

Good luck!!

8

I did not have the burning sensations/electrical pulse feelings for five days.  I was back ti my old self and feeling good.  Today, they are back.  Not quite as bad, but noticeable.  Now I am down in the dumps again.