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SimLex
New Member


Date Joined Jun 2008
Total Posts : 4
   Posted 7/11/2008 9:23 AM (GMT -7)   

Hi,

I'm not sure if this is the right board to post this question, but I thought I'd give it a go.

I've been experiencing problems with my legs, feet and arms
(mostly legs and feet though) for the past two months. I
have pain, a "heavy" feeling in my legs, muscle twitches,
tingling sensations, burning sensations, etc.

My doctor did blood work and everything looked good. He
also had me go in for a nerve test. I got a call from the
nurse today that the test did indicate neuropathy and he is
starting me on a medication trial for two weeks to see how
it works. This is literally all she told me on the phone.

I've looked up some info on the web, but I guess I'm
curious if anyone on this board has experience with this
and what it's been like for you.

I'm taking a generic of Neurontin. The nurse said to call them in two weeks to let them know how things are going on this med.  I'd really prefer to get an appt. so I can talk to my doctor and hopefully get some more info ... what caused this, what can I expect over time, etc.? 

Thanks for any insight you may have!


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 7/11/2008 7:58 PM (GMT -7)   
Hi SimLex and welcome!!

Yep, you've posted this in just the right place. If you happen to have diabetes then you may want to post in that forum too. The reason I say that is neuropathy is very common in diabetics. I have a little neuropathy but at least it's still minor at this point. The source of most of my pain is fibromyalgia but that's another story.

Keep us posted on how you progress with the medication. Sure hope it works for you!

Chutzie
Co-Mod Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
***************

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 7/11/2008 8:10 PM (GMT -7)   
Hi Sim, yes I too have neuroapthy in my hands and feet so I know where you are coming from. I was on Cymbalta for quite awhile and it worked really well. Alot of diabetics are on Cymbalta for the neuropathy. I am not diabetic. I was then put on Lyrica for it and its worked. I don't have an explainatio for it, but if the Neurotin does not help talk to your dr about either of the two drugs I mentioned. Good luck, Susie


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 7/11/2008 9:42 PM (GMT -7)   
I take generic neurontin for neuropathy in my feet and legs [not associated with diabetes - mine is from my Crohn's disease]. The neurontin has really helped with the symptoms. I hope you doctor told you to gradually work up to the dosage. Mine wanted me at about 500-700 mg three times a day. But he said if I started out there I would likely have side effects that would make me want to stop the medication. So he had me start at 100 mg once a day for 3 days, then 100 mg twice a day for 3 days, then 100 mg three times a day, then 200 mg twice a day, etc. etc. I worked up to the dose that controls the symproms.

I hope that the medication relieves your symptoms. Make sure when you see your doctor that you make him/her test you for the likely causes of neuropathy. If those tests don't reveal a cause, ask for a referral to a neurologist that specializes in neuropathy. I wish I had demanded a neurology referral sooner than I did.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


SimLex
New Member


Date Joined Jun 2008
Total Posts : 4
   Posted 7/12/2008 4:49 AM (GMT -7)   
Wow ... thank you so much for all of your responses!  I really appreciate the time you took to reply. 
 
I'm a little frustrated that I got so little information yesterday from the nurse when she called.  Yes, I do take partial responsibility in that.  I just didn't think of all of these questions until after we were off the phone.  I may have mentioned in my first post that she told me to take this two week trial of Gabapentin (generic Neurontin) and call them in two weeks.  I really feel that I want an appt. so I can talk to my dr.  I think Monday I'm going to call and get an appt. scheduled for two weeks.
 
I have a lot of questions for him.  What has caused this?  What can I expect over time with this?  Will I be on medication for the rest of my life?  Is this something that is progressive in nature?
 
I've been very lucky in that I've always been so healthy.  I've always been one of those low maintenance patients.  I go in for my yearly checks, but never have any complaints.  All is well usually.
 
So this is very new to me. I am realizing ... and I've heard other people say this, but am now experiencing it myself ... that one has to be in charge of their health care and be very proactive and persistent.
 
I have only been with this dr. for six months now and have been pleased, but this has been disappointing.  It bothers me that there is now a diagnosis for what I've been experiencing and that it seems that he doesn't plan to see me in person until my next scheduled appt. in January.  It seems that he plans to adjust meds over the phone, by way of his nurse, and just leave it at that until Jan.  Well, not going to happen.  I realize that in the grand scheme of things, neuropathy is fairly normal, and not a huge deal.  But, it's new to me, and I have the right to get some questions answered.  And maybe I'll need to change to a new dr.  We'll see.
 
He has started me at 300 mg. at night for two weeks.  Do you know if I should expect to see improvement quickly, if this med/dose works, or will it take a little while?  I took the first dose last night and am kind of dragging this morning.  I know a lot of times that side effects will wear off eventually.
 
By the way, I am not diabetic.  I am a very healthy 37 year old female.  This seemed to literally come on overnight.  Weird.  I looked at some info on the web yesterday and was reading over some of the causes and I think I saw mentioned on one site that it could be caused by a virus.  I did have a very bad case of Fifths disease back in December. 
 
Again, thanks so much for your replies and for letting me vent a little! :-)

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 7/12/2008 5:20 AM (GMT -7)   
Hi, Sim. Welcome!

Like Ides said, this is a drug most docs want you to titrate up from a small dosage - so it seems odd to me that your doc started you at 300 mg right away. I tried Gabapentin 2x (about 5 years apart). Each time it was with different doctors, but they both started me with only 100mg at night for 1-2 weeks and then added 100mg every 1-2 weeks until they had me up to the dose they wanted me at. Unfortunately this med did not work for me. The good news is that there are several meds out there that treat this type of pain, so if this one doesn't work, be sure to let your doctor know. I am now on an older medication that is not very widely used anymore (according to my doctor anyways) called Zonegran. For me, it seems to be the best so far of all the ones I've tried for nerve pain and it is the only one I've tried that doesn't seem to cause any side effects for me (like the sleepiness or memory problems I had with some of the others).

Best of luck to you. If you are still feeling sleepy and lethargic, I would call the doctor's office and ask if you can back off to a lower dose and work your way up to the 300 mg.

Ry

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/12/2008 8:27 AM (GMT -7)   
Hi, SimLex,
Welcome to the Healing Well forum. Sorry I didn't chime in sooner, but I'm fighting a virus this week and am dragging more than usual.

I am also on gabapentin. Have been for about 2-3 years now for neuropathic-like symptoms that started after a fall I took about 4 years ago. My EMG was normal, and I'm not diabetic. I do think you have a lot of great quetions to ask your doctor - that you expressed in your last post. If your EMG (that was probably the nerve test) was positive for neuropathy, that generally means there's nerve damage somewhere, but you want to know what's causing it, especially if it came on quickly. You said you've been healthy. So I do think it's important for you to learn the cause(s), but starting quickly on treatment isn't a bad idea either. You're right, it can be a virus, and I'm not sure if neurontin is the best way to deal with that - I mean, it will deal with symptoms, and help calm the nerve down, but I don't know if it will help with the spread of a virus. But it's so widespread in your body, I'm not sure if a virus would impact that many areas (I'm not a doc, I'm only speculating about this). These symptoms could also come from a variety of nerve issues with the spine, as many of us know (that's what's causing mine in my legs and feet). You still want to find it out. If your doc's not a neurologist, then I'd ask for a referral to one. You need a specialist to help you figure out the cause, and that will help answer many of your questions.

As far as dosing the neurontin (gabapentin), my neurologist also started me on 300mg/at night for 3 nights, then he wanted to add another 300mg for 3 days, and then another 300mg to have me up to 900mg in about a week! I would have been a zombie! Everyone's body is different. I had to practically beg him for some 100mg tablets, and I inched my own way up slowly. I now take 400mg, 4X day which is a mid-level dose. Lots of people take more. But it can be sedating, and that's one of the things I don't like about it. A newer medication which is similar is lyrica, and you might ask to be switched to that, since you're just getting started. It's more expensive, though, and there's no generic, so if $$ is an issue (as it is for me) you may have to stay with what you've got. The lyrica is very similar but supposed to have fewer side effects. I tried it, but also found many docs don't yet know how to dose it properly, and i was on too low of a dose to really know if it was helping.

Keep that list of questions, get in to talk with your doc, or just ask if you can be referred to a neurologist. And keep us posted!

PaLady

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 7/12/2008 12:54 PM (GMT -7)   
Sim, you are so right. We do have to stay proactive in our care we get from drs these days. I would be very P. O. if my dr sloughed it off on a nurse to give me a cold call and say its this and he wants you to take that. Not good enough. I am with you, come Monday am, I would be making me a call for an appt in 2 weeks so I could get answers from him, thats what he is paid to do. Also, while its fresh in your mind, make a list of questions now and slip it in your billfold. Then you will be prepared and can cover all your bases. Susie

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