NeuroTalk Support Groups - I need help figuring out my DX

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"Well within a couple hours my feet, ankles, legs had random hot sensations, pin/needles, vibrations. Pretty uncomfortable, not screamly painful but enough to really bother me. Also for up to a week after that my feet were more painful, and only calmed down a couple days ago"

yes i think most P/N sufferers have the above after exertion. I certainly do
You certainly are showing classic symptoms. My first indication was night cramps in my feet for 6 months then a numb patch on sole of the foot then toes and now to the ankles burning etc. It really sneaks up on you...

"'ve dropped off the Gabapentin after a month, 900mg a day wasnt doing much except making me spacey. I started Amitrityline, hoping that helps with pain and depression"

You should be on low dose amitrityline 25mg or less, apparently not enough for depression but perfect for pain. Im taking it and it really is a magic bullet however after a few weeks im finding the side effects even worse than Lyrica

Quote:

Originally Posted by brohar (Post 746107)

So for you other PN suffers is it common that you feel fine when you are on your feet, being active, and it doesnt hurt until after?

Hi Bro, (Well, somebody was going to say it)

Somewhat and sometimes.

Mine began with the sensation I had something bunched up under my toes. From there it progressed to the numbness & tingling, and eventually to pain & burning.

There are days when I know I have to do errands/chores and dread putting the shoes on. But after being somewhat active, it gets easier for a time, and then more difficult. If I've been very active, it can hurt/burn (worse) for several days afterward.

Doc

I also suspect I have Benign fasciculation syndrome. I do find Lyrica helps with those.

I do find that the pain is alot worse after walking or any type of exercise where I'm on my feet. I can ride a stationary bike without any pain flare up. I get a deep ache in my feet and legs after I've been on them for a while. So for days I know I'm planning alot of walking I take a Vicodin before I do the walking, to prevent the pain.

One more thing, have you found that your feet get red and hot when you have the pain? If so, you might have Erythromelalgia. I have a mild case of it myself. It is worse with exercise and wearing running shoes. And also with hot days. You can get the tingling with it as well.

May I ask how much Amitrityline....

Quote:

Originally Posted by brohar (Post 746107)

I wanted to check back into the thread i started and give a general update and ask some questions. So since my last post not a whole lot has changed although I think ive possibly met some doctors that can help. At this point im pretty sure I have something more than just a trapped nerve or injuy, but i can hope.

A few weeks ago I had several good days of just light tingling, I got excited and tried to shoot basketball by myself for 10 minutes. While doing so, i felt great and my feet didnt hurt while doing so. Well within a couple hours my feet, ankles, legs had random hot sensations, pin/needles, vibrations. Pretty uncomfortable, not screamly painful but enough to really bother me. Also for up to a week after that my feet were more painful, and only calmed down a couple days ago.

So for you other PN suffers is it common that you feel fine when you are on your feet, being active, and it doesnt hurt until after?

Ive had more blood work done by a Rhuemy and a new Neurologist, I'm also supposed to get the dreaded brain MRI to rule out MS. I REALLY hope that is not the case... Lately Ive been looking at this possible DX called Benign fasciculation syndrome. Other than fasciculation its been known to result in nerve pain, exercise intolerance, fatigue, etc. It also often presents itself during times of overexertionand mental stress, both of what i was experiencing when this all started.

I've dropped off the Gabapentin after a month, 900mg a day wasnt doing much except making me spacey. I started Amitrityline, hoping that helps with pain and depression.

you are taking? If used for Pn symptoms it is given at a much less amount than what is needed for Depression. I am on 30mg. at bedtime.......best sleep aid I ever took! Is helping with my breakthrough sensations, but I am also on 900mg. Gabby. I was thinking of asking Doc to up Amitrit. and decrease Gabby. I also have muscle fasciculations, had them non-stop about a year ago, now just a few a day. The more I read about it and after reading my PN sister, Rosethorne has fasciculations also (we have almost identical symptoms), it makes me suspect Benign Muscle Fasciculation syndrome is much more than muscle fasciculations alone.

I would be interested to know if it is common for PN patients to also have muscle fasciculations.........

Good luck with your MRI.....I had 3 of them, along with a spinal tap to outrule MS.

The best advice I can give you is to be thankful for everything that is ruled out, even though you would like a diagnosis, look at it in the opposite way, at what you don't have, it took me a while to learn to look at it that way, but it sure helps ones mental stability.

Im starting at 10mg of ami and moving to 20mg and see how that goes. I guess thats not enough to help with depression but less pain makes me happy :). So far i sleep much worse on ami than i did gabapentin. I have too many dreams now!

Interesting about the BFS relations too, my twitching is only maybe 100 or so a day give or take. But its really weird and anxiety definately increases it.

I just got a call this morning from my neuro that said my B6 levels were around 110 and that could be causing all my issues. However, she did say not all symtoms may go away immediately when normal levels are reached. I started a new thread on this topic.

Twitching often can be due to low magnesium or a skewed calcium/magnesium ratio.

What are your B12 and D levels? These are more significant for nerve function and pain.

It is really unlikely B6 is your culprit unless you are doing some extreme thing with supplements.

Quote:

Originally Posted by mrsD (Post 746913)

Thanks for all the helpful info and support mrsD. I have a retest on my B6 in a couple of days.

I've been on the ami now for about a week at 10mg, it seems to help calm me and the pain down. It doesnt really help me sleep and ive felt tired all day today, although the previous days were ok.

So one thing ive been pondering is that ever since all this started in november ive been on either: Celexa, Clonezapam, Gabapentin, or amitriptyline. Currently just amitriptyline. Ive read up on how some of these can acutally cause electrical zap/shock sensations especially in withdrawl. I cant attribute this to the cause of all my symptoms but i definately feel like a christmas tree with all the eletric running through me and was wondering if its increased by my meds.