sensory disturbance in left hand getting BAD

[doublevision1]

Since I last wrote about this 3 weeks ago, the pain/discomfort in my left hand has increased, while at the same time I have increased my daily dose of Neurontin from 2700mg to 3600mg.  This symptom seems to be  a residual symptom from my last attack in March 2008.  All the other numbness/nerve pain in my feet and all through my left side has remitted.  The problem in my left hand has remained and in some ways is now worse, although the hypersensitivity to touch has remitted - in some spots just replaced by a numb, dull, dampened feeling.

My left index finger and thumb in particular have lost much sensation.  This correlates with a lesion I have at c4.  It is getting increasingly difficult to type; my fingers are so clumsy.  My hand is still feeling swollen (but it's not), tight (like MS hug in the hand), and my palm often has a burning sensation.  Fatigue makes it all worse.  The longer I keyboard, the clumsier I get and the more pronounced the disturbing sensations.  I can normally type 80 wpm; I'm sure it's less than half that now, and I make typos every other word that I have to fix.  I skip keys that I hit with my index finger; I can't tell that I didn't make contact with the key.  It's FRUSTRATING.

I can fall asleep OK at night as I'm usually exhausted, but if I happen to awaken early, there is no getting back to sleep because of this discomfort.

This is particularly concerning as I am in the process of trying to return to work, working part time from home to start.  This is really getting in the way since at the moment, my assignments involve researching and writing up lengthy documents.  Just to type this post is a struggle.  I hope to see another OT soon who will hopefully set me up with voice-recognition software.  This would greatly reduce my need to type, esp in word docs and email text.

I believe it was Quix who suggested Amitriptyline (sp?) to me.  I will be inquiring about this with my neuro tomorrow.  Has anyone here had luck with this, for similar symptoms?

Also I will ask about the other anti-convulsants, although I realize I shouldn't hop around on meds and need to give it time.  For anyone out there with experience with this, I'm wondering how long one ought to stick with Neurontin before trying something else?

I read that therapeutic doses of Niacin, much higher than RDA, is helpful in some patients with neuropathic pain.  Has anyone tried this?

Lastly, does anyone else have similar symptoms that never resolved?  How do you cope?  I'm not sure that this won't eventually drive me clinically insane.  I find it hard to sustain concentration on anything, I am so distracted by this discomfort.  I can't even read a paper or magazine for long as I can't comfortably hold it in place, plus my mind keeps wandering back to my hand.

I'm amazed that considering this is such a small part of my body, how huge of an impact it is having on most aspects of my functioning.

db

[Rena705]

Just to let you know that when I was first put on Lyrica on a dosage of 75mg/three times a day, I had only taken 5 doses and that is when I had my first bout of double vision.  Apparently it was way too strong a dose to start at and when I tried to start it again I started at 75mg/day, increasing by 75mg every 5 days and had no problem but it did not help with the pain for me.  I wish you luck with it honey but be aware that it doesn't work for everyone.  Heather had a real bad time with it and swears that she will not go near the stuff again so take heed ok?  Good luck with the dr.!

Rena

[essdipity]

If you decide to switch to Lyrica, you may not have to taper down. Sometimes, when drugs are similar, you can simply do a substitution. I don't know if this is possible in this instance, nor do I know what an equivalent amount of Lyrica might be, but it's sure worth discussing with your neuro. Good luck and let us know.

ess

[Fluffysmom]

When you come back to the computer after resting your hand, I just wanted to say that I'm sorry for your pain and the crazy-making unrelenting overwhelmingness  (is that a word?) of it.

I switched from Neurontin to Lyrica, and it was a fairly easy switch.  I was at a much lower dose, but it was fairly easy to taper off one and add the other, and Lyrica is more powerful so my dosage is even lower now.

I can sympathize with the typing thing, the *@##**^%! part.  I was having trouble with my tremors, typing on an unfamiliar laptop on wobbly table, and hit something and this epic post disappeared into the ether.  I cussed, stubbed my toe on the table, almost knocked the laptop off the bloody table, and didn't do nearly as well at rewriting my post.

I suppose PT might be helpful in strengthening small muscles that could add to your control, or maybe some of the neuropathic pain is from a nerve impingement and not all from the lesion in your spine.  If that were the case, maybe PT might help release something that could help. How about a TENS unit; does that work for MS neuropathic pain?

I'm hoping you find some relief soon.  I have been having pain from a lumbar disc herniation and hip labral tear and arthritis that won't respond to anything and is interfering with my sleep.  I can't help but think that life would be better if I could just get some quality sleep.

Wishing you peace from all this,

Kathy

[doublevision1]

I'm swearing like a sailor right now (no offense to the navy, lol)...I just spent 20 minutes butchering these keys to try to respond, and I hit some $%^*@! key that closed my browser.  Post deleted.  That's the kind of thing that is constantly happening because of these stupid numb fingers.  I honestly felt like I wanted to cry!  Can't wait for the Dragon Naturally Speaking.

Deep breath.  Start again.



wonko:  I had never heard that about curcumin, turmeric, ginger and find it interesting.  Unfortunately I don't believe it would help me in this instance given the source of my problem is neuropathic, not inflammation.  No actual swelling at all, just the perception of it.  My brain and spinal cord are tricking me with mucked up nerve signals.  However I will sure keep that in mind for the next time I happen to have some inflammation.

Ess:  exactly my question!  How might I be without the high dose of Neurontin?  Quite possibly, much worse.  Or maybe no different.  Guess I won't know for sure until I try to wean off of it.  If in fact it actually has been working and gets much worse if I try going off it, you'll probably hear my hollering all the way to Maryland.  The relief you get from amitriptyline and Lyrica give me hope, and a backup plan.  I'm pretty certain this neuropathy is MS-related and nothing else/nothing worse, since it was the first symptom of my last relapse, and worsens with fatigue and heat.  But I suppose I need to defer to my neuro on that one.  Who am I to diagnose myself?  lol

Re PT, yes I have contemplated that.  The MS nurse also suggested it today.  But, being me, the "20 questions girl" as I have come to be known at work, needs to know, WHY physio?  WHAT exactly does it DO?  HOW does it work?  If the problem is a lesion in my spine sending funky signals to my hand, how will exercises affect that process?  I didn't get into all of that with her, but I will with my neuro, and also the PT if I do go.  

I know it can't hurt, but with a limited store of energy and so many other appts, I'd really like to better understand the what's, why's and how's of it all.

Dr. Quix, Medicine Woman:  DB Cooper, hmmm, I think I saw something about that on Dateline recently.  Love those real-life mysteries!  Geez if I was him, I'd wear my best disguise to further evade the FBI, and take my bags of stolen money to the best MS clinic in the world (just where is that, anyway?) and get myself a cure.  Ah, one can dream......

If you do get that software soon, let me know how it's going.  And if I beat you to it, I'll do likewise.

Rena: so glad to hear that amitriptyline is also helping you.  I'm convinced it's worth a try.  Thanks for the reminder about the photosensitivity.  I think I'm vulnerable to that; I had to go off the pill 10 years ago because of it.  In my case the problem was only cosmetic, but really annoying.

I'll let you know how my neuro weighs in.  I asked specifically about amitriptyline; other anti-convulsants and any other nerve pain meds, and the niacin.  Hopefully he comes back with a recommendation that will work for me.

Now I gotta rest this hand for a good long while.

db

[Rena705]

I am currently on Amitriptyline (Elavil) 40mg/every evening.  It has been a wonderful thing for me so far...the pain in my legs has pretty much dissipated although I still have trouble if I am too overactive.  I am now having other symptoms but I believe they are a result of this wonderful Alberta heat wave we are having.  If you do use Amitriptyline honey PLEASE BE AWARE OF IT'S ABILITY TO MAKE YOUR SKIN PHOTOSENSITIVE!  There is further information on it in the health pages along with a warning from myself...please heed the warning and let us know what the doc has to say.

Lots of Hugs,

Rena

[Quixotic1]

As in the infamous DB Cooper - the bank robber who hijacked the plane in the 70's and skydove into the mountainly wilderness....well I had some analogy to make, but it has slipped away.

What an awful thing to have with your hand!  I pretty much agree with all of ess' comments.  You've about topped out on the Neurontin.  You might ask about adding in some amitriptyline at night and then make the switch to Lyrica.  That sounds sound to me.

I have never had a sensory thing last, just the assorted weaknesses that appeared.  Those stick around for me.  And I have the swollen mottled leg I had last summer when we thought I might have a DVT. (but, didn't)  It's back, a cold, dusky, mottled slightly numb swollen foot and ankle.

The voice recog software sound like the ticket.  I've been proscrastinating getting the Dragon Naturally Speaking set up, but this would be a good weekend to do it.  I'll report on how well it works.

Your hands are incredibly huge in terms of the proportion of work and info you do and need.  There are more nerve endings in the fingertips than any other place except the lips.  Pain and numbness are very disabling.  No one thinks you are making a big deal out of a little thing!  Now if you were moaning about how numb your knee was, we would be asking why you type with your knees and picturing a very interesting keyboard.

Take care and be insistent with your doc that you need to move on!

Quix

[essdipity]

You're on a high dose of Neurontin and it doesn't seem to be working all that well. (Of course, who knows what you'd be like without it?)  Nevertheless I think you've given it more than a fair trial. Lyrica helped me with the very first dose. Now I also have amitriptyline, mainly for sleep, and the low dose, in conjunction with Lyrica, has reduced my problems with neuropathy almost entirely. Yay. The pain usually only kicks in when I'm very tired or stressed.

More might be going on with you than neuropathy, but it wouldn't hurt to try another med. The problem with your fingers not functioning properly must be maddening. If this doesn't resolve, see if you can get a referral to a physical therapist. Maybe certain exercises would help. I had great results from that after a serious wrist injury quite a long time ago.

Yes, it is quite possible for symptoms to stay around permanently. People just adapt somehow. But don't jump the gun---you're nowhere near there yet. Try different meds, and get some help with that hand.

Good luck with all of this. I know it's so exasperating.

ess

[wonko]

Sorry to read of your discomfort.

I've read that some people get relief from joint pain and inflammation by eating/supplementing with curcumin, turmeric, ginger.  If you run out of Rx options or want to try something different, it may be worth considering.  Of course, we have on the forum recent reminders to be wary of testimonials, and rightly so.  Just sharing what I've read FWIW.  

I hope you can work with your doctors to find an effective treatment!
Take care