How long have you had your Neuropathy?
 

What medication do you take, and how does it cover your pain?

What kind of pain do you have? Numbness? Balance problems or problems walking?

Has your neuropathy progressed? Improved?


I guess this is sort of a mini poll for those who are interested.


I have had neuropathy for about four months. I take 1800 mg. of gabapentin, which seems to work sometimes and other times it doesn't. I also take vicodin which sometimes also helps, depending. My pain ranges from fairly bad to lower level. The type of pain I have is body wide burning, stabbing, cramping, searing and stinging. Only rarely do I feel tingling. It will often come and go in specific areas, but is always going on. I currently have no numbness, balance problems or problems with walking at this time.

I saw a second neurologist recently, took another set of blood tests, and am having my first EMG in the beginning of March. I am also looking into going into pain management.

30+yrs. Back when it started I had carpal tunnel also. (started before my son
was born)

I don't use any Rx med for it orally. But I very occasionally use
Lidoderm patches on the tops of my feet. Haven't used any since New Year's, for example.

When burning is very bad I use Biofreeze on it. (usually in the hot summers)

Sometimes Tylenol and sometimes AlkaSeltzer. But not recently. Sometimes OTC Aleve liquigels. But not every day, or even every week.

Gabapentin, and tramadol were not available 30 yrs ago.
Using my supplements did help. Controlling my diet helps.
Fixing the thyroid problem helped enormously.

I baby my feet now. Wear shoes that they like.
I have learned self hypnosis and am rather used to it by now.
I don't think about it much except when I post here. When they bother me it is always at night. Rarely in the daytime now.

Think this response applies to most questions
 

I think that we who suffer are being denied the research needed. Every clinical trial I can find is for diabetic neuropathy. Doesnt anyone want to figure out what is causing the debilitating pain for the idiopathic?

Well, I have noticed sx's for less than a year. (it will be a year next March?)

I only had some burning pain briefly, and then it went away. Other than that I am not in constant pain.
And I do get some face pain, and migraines.

I think the face pain may be related, the migraines aren't.. I've had those for years.

My main issues are numbness and weakness.

Almost a year ago when this started it was weakness in my upper extremities.
(sparing my legs)

Now, I have problems with total lack of feeling in my feet that comes and goes, and difficulty walking.

I think my arms may be alright though?? I haven't dropped any more cans of soda on my computer in a looong while. :)

However, since there is now difficulty walking that wasn't previously there, we are assuming I am progressing (it was sensory greater than motor)

i have had PN for over 7 years now. It has progressed steadily from my big toe on both feet to just below the knees and in my hands past my wrists. In the beginning it was very painful in my feet, stepping on a pebble was like stepping on an ice pick. My feet and legs eventually progressed into a deeper degree of numbness which helped the pain , along with many other things i have tried to differeing degrees of success, tens, interferential therapy, vitamins, wellbutrin, neurontin, lyrica, topamax, paxil, effexor, trazodone. Except for wellbutrin which did help the pain, the other drugs i did not react well to. Recently in the last 9 months the pain has started to ratchet up again in my feet especially.

Because of deep numbness in my feet my balance is very bad, ironically i also feel like i am walking or standing on broken bones even through the numbness. 20 minutes is it for me standing. I also drop or knock over a lot of things with my hands.

I have waged a long war with PN and feel that im losing badly.

Since the invention of pain
(& the wheel, & fire, & flint tools)
:-(

Did they...
 

diagnosis is sensory motor primarily axonal with demyelination peripheral neuropathy. Official cause is ideopathic, though im sure it was caused by toxins.

no one in my family has had anything similiar from what i can find out.....i have asked around at family reunion and from relatives but nothing has come up.

I have had it 2 years. I have tried many meds from neurontin,lyrica so on and now just take an occasional vicodin which still does not manage my pain.
I am looking into more invasive treatment again.
I have balance and walking problems. Along with touch or different textures. I have rsd too.
I have improved in some ways but also spread so am not doing good in others if that makes sense

ive had cat scans done on my ankles and feet to check for charcot foot because of the number of breaks in my ankles and toes i have been having. Also had a bone density test done but no blood tests for cmt.

Hi all, for me SFP neuropathy five years ago this month, slow progression up my leg and in my hands it comes and goes. It hit me like a freight train overnight and I had never heard of neuropathy before this.
I have bounced around on meds, starting with gabapentin to cymbalta, lyrica, nortriptyline and back to gabapentin. I also take norco for my back pain and flexeral, I've come up with a cocktail that manages my pain. It doesn't work at night though, ativan calms the pain so I can sleep.
I've just "retired" from work at 52, got approved for long term disability last week and started the SSDI grind too. I wanted to function as long as I could but mentally I began to lose the race, I was always super good at my job and my yearly review in November 08 pretty much wrapped up that I couldn't keep up anymore. I am relieved, but sad about the work failure, much less stress now and easier to face things financially.

I first noticed my PN 14 months ago.

Symptoms have steadily progressed since then -- moving from toes to feet, to legs. Just starting in my hands the last two weeks.

Currently, I'm on 1500 mg of gabapentin per day, but I'm about to request increasing it to around 2100 mg/day since I'm starting to have pretty regular "break through" pain with only 1500 mg/day.

I've had extensive tests, but currently am labeled "idiopathic".

Hello. Your symptoms and mine are very similar and I am getting help now and seeing improvement. I was diagnosed 10 years ago with monoclonal gamopathy and noone suggested treatment. So I got progressively worse - all the symptoms you mention and getting harder to walk (and a few falls and tripping over my own feet). Finally saw a neurologist who after many fancy blood tests, diagnosed me with antiMAG and put me on a regime of plasma exchange (plasma pherisis). That was 4 months ago and I am seeing improvement - not huge dramatic improvement, but I am walking better and I believe I have more feeling in feet and legs. The same neurologist is now suggesting Rituxan - don't know if I will do this or not yet.
Hope this info helps you to know that there is new information out there and I hope you can also find some help. REgards, Nancy W.

Welcome to the forum Nancy.

I have had neuropathy for at least 10 years, if not longer. My first real diagnosis that I remember, was carpal tunnel at least 10 years ago. I do remember complaining about this ache and that ache, and being told I was too young for so many aches and pains. It is all gluten related for me, at least we think it was the monster that caused all this toruble.

I have gluten ataxia, sensory neuropathy, axonal neuropathy, arthritis, and good old sleep apnea. We will never know where my B12 level was way back then, no one ever tested me for the level. Five years ago, I started taking B12, and will always take it. There finally has been minimal improvement, which is all good. I take 5000mcg daily of Jarrow Methylcobalamin Sublingual B12, and my neuro told me to continue with this dose. My last level came back at 1016. I'm thinking it must have started out pretty low.

Over 13 years.
My pain has been up in the 8 range much of that time.
Now my pain is about a 4 or 5.
Take 150x2 of Lyrica occasionally Tramadol and Lidoderm Patch.
My b12 is 396
I walk or run 3 times a week and I run 4.2 miles Saturday! Milestone for me! I hike once a week in the summer.
I eat healthy and I've been on supplements (again) now for 2 months and they are helping. I need to stick to it relentlessly!!!!!
My goal is to get off all rx meds!

all of my blood tests, which were extensive, i felt a few times like i had been bled out, and for that matter all of my tests except for emg/ncs have come back negative. I havent been walking except for run of the mill walking in a store, around the house etc because it has become much too painful to do. My walking has become much worse.

Hope I noticed that this thread was started back in Feb 2009, and I am guessing that the test did say you have PN because of some of your relies. Did you find out if it was motor, senor, and auto or more than one? Maybe you wrote it down before and I just missing it.

How long ago did PN started, I don't know. I think I had it for a long while but could not figure out what was causing the pain in my feet and ankles at that time. I went to a foot doctor because it got worse and she insisted in farther testing because she believe something else was going on. She wrote out a script for a EMG/NCV Test. It show that I have polyneuropathy (senisor motor) thing going on. This test was taken not to long ago.

How are you doing Hope? Are you able to find something to give you some relief? :hug:

I've had PN about three years now.

Diagnosed as SFN - alcohol/liver disease is the "smoking gun" no other explanation forthcoming despite lots of blood tests and EMG.

It was on and off for a year or so but now progressed to permanent. I get burning mainly in the toe/ball of feet but then for no reason apart from perhaps the temperature (?) it converts to numbness. Also more fatigued that I used to be - but not sure this is related.

I take no painkillers only supplements -not sure they do anything but you have to try.

toxins
 

what kinda toxins were you exposed to

".....more fatigued that I used to be....."
Westie,
Try massive B12 methyl cobalamin sub-lingual minimum 5000 mcg/day for the fatigue factor.
(you cannot O.D. on B12, it is excreted like vit 'C')
PN will make you fatigued and seem like you are sluggish, legs leaden (like cement), entire body malaise.

Hi Trishann. I went back and read my original post here back when I was four months into my PN. It is now about ten months later. All of the tests including an EMG that I took back then came out normal, so I am still ideopathic. I was never really given any kind of diagnosis. Not too long after that I lost my health insurance for awhile and even though I got it back, it has been quite awhile since I have gone to the doctor. As far as my PN is concerned, I have had some changes. In June I took myself off the gabapentin as it wasn't working for me. My PN has gone from constant pain around a 7, 8 and even 9 to a current lower level of maybe 2 or 3. I used to have body wide pain at all times and now the pain is mostly centered in my legs, especially my left leg. My entire back, stomach and knee caps used to burn on fire, now instead I am experiencing more bits and pieces of pain in those areas during and flare up.

The flare ups come and go and seem to come on mostly at night when I am in bed. I know my hormones flare it up otherwise I can no longer pin point it to any one thing. Things seemed to have changed a bit, but with PN you can find yourself getting better or going right back to your worse period. I just don't take anything for granted and try and get through each day at a time.

Thank you for asking Trish. I hope you too are able to find something that works in giving you relief. Please keep us posted...:hug:

Hope I am so glad that you got your insurance back. Hope you see a doctor soon and maybe get something that can help. And you are so right, nights
are really bad.

Most of the time I will sleep with my MP3 player on just so I can get my mind off the pain, it helps some; and I sleep with a heating pad, but it has a saftey that turns off. I also had this special made pillow that you put between you leg, it just a foam cushion, which it helps sometimes.

I couldn't take gabepentin either, but Lycria doesn't give me the bad side effects and also gabepentin did not do nothing for me, but it does wonders for other. You have to just keep trying until you find something that works for you. Even though it doesn't take all the pain away, at least once in awhile you get some relief.

Trish :grouphug:

I too
 

have MGUS. Diagnosed after PN discovered 5 years ago. I still get my yearly blood test and, fortunately at this point, it still is at an extremely low level. But, there always is the small little voice in the back of my head that can be brought forward when I read about a person dying from multiple myeloma.

Hi Nancy W,
I was diagnosed with anti-MAG neuropathy 7 years ago. I have tried IVIg (with improvement initially) and numerous oral medications. I would like to try Rituxan, but my insurance won't cover it. I am currently going down to Seattle to see a neurologist at Virginia Mason. Not sure if he will have anything new to offer, but at least he has taken care of others with this ailment. How are things going for you?
Best wishes,
NancyKay

I've had PN for 2.5 years.

I currently take:

1) Gabapentin- 600mg tablet (4x a day)
2) Lyrica- 100mg caps (3x a day)
3) Baclofen- 10mg tablet (6 tabs a day)
4) Methotrexate- 2.5mg tablet (8 tabs per week)
5) Folic Acid- 1mg tablet (1 tab a day)
6) Vitamin D3- 1000IU tablet (1 tab daily)
7) Vitamin B12- 1000mcg tablet (1 tab daily)

These are all for Peripheral Neuropathy/Auto-Immune Disease/Fibromyalgia (They think they are impacting one another to make the pain worse)

As for pain, my feet have every kind of pain you can think of, burning, stabbing, aching, tingle, pricking, etc. I also have some partial numbness in the bottom of my feet. The fibro causes me to get random aches and pains- sometimes feeling like I have been hit in spots- so tender even water in the shower, or a finger grazing them kills.

For about 2 years my Neuropathy kept getting worse, then they put me on Methotrexate and things started to improve. However I hit a plateau a few months ago, which I wish they would figure out how to break...I am at the end of my rope with this (living in perpetual pain is enough to drive you mental).

pn
 

Onset 10 years ago from very healthy to within a year, wheelchair and other ambulatory aids. Have had all the tests and even IVIG (did no good) - sural nerve best disagnostic tool i've had - almost complete loss of large mylinated fibers, less loss of small, also loss of both large and small unmylinated fibers, and severe damage to axons.... nothing they can do for the pn at all, I accept that, my biggest battle is with the autonomic portion, gastroparesis very very severe from it and constantly have malnutrition and nausea every day, cardiac issues, and severe back pain and weakness... the back pain is from disk disgeneration and I think from being so sedentary, another MRI this week to see how bad it has gotten.... they would do surgery if I could get around normally but I cant, so we're trying to find some alternative so I can least sit up for more then a couple hours at a time.

The weakness is scary and progressive - but PT tried repeatedly has just made me worse.... so just take it day to day... I dont expect much expect hoepfullly maybe some relief with the gut so I can eat something again,and a lessening of the back pain.

They think its a form of heridtary sensory motor automic PN, but there is no test for the form yet. And yes, another fam member has had PN in his feet for 40 years with no diagnosis...

Ya never know whats gonna happen, just take each day for what I can make out of it.....:rolleyes: