How long have you had your Neuropathy?

Kitt · 02-22-2009, 06:44 PM

Thank you. Have you ever considered having DNA blood testing for CMT that they can now test for? There are many types and sub types. A spontaneous mutation is considered rare but it can and does happen. Just a thought.

daniella · 02-23-2009, 08:33 AM

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

echoes long ago · 02-23-2009, 09:18 AM

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.

Kitt · 02-23-2009, 10:51 AM

Quote:

Originally Posted by echoes long ago

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, You know that Charcot Foot is not the same as CMT. Charcot Foot and CMT were discovered by Jean Martin Charcot along with a lot of other diseases such as Charcot Joint, ALS, MS, etc. He even had a hand in Parkinson's Syndrome. (Jean Martin Charcot, Pierre Marie, Howard Henry Tooth for CMT).

Lots of times Charcot Foot (Charcot Joint) are due to diabetes. That doesn't mean that you have to have diabetes. They are neuropathic osteoarthropathy which is a progressive degeneration of a weight bearing joint.

Hope you find some answers.

jannaw · 02-23-2009, 12:10 PM

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.

EHorst99 · 02-23-2009, 01:08 PM

Quote:

Originally Posted by Hope15

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.

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".

DanP · 02-23-2009, 02:04 PM

After 21 years and a gazillion tests I am still idiopathic. And no, I am not diabetic or near-diabetic. They can find no reason for my PN and I no longer care. The untreated pain is severe but for the past 7 years I get good relief using Fentanyl patches (125mcg/h) changing them every 48 hrs - this reduces my pain down to a rough 2 to 4 on the Mankoski scale. (And I don't want to think about those first 14 years - causes an urge to kill.)

I've learned to pretty much ignore these lower levels of pain as well as the numbness, pins & needles, and all the other PN symptoms. I continue to walk a mile or two daily and still drive my car w/o incident. Next month I'll be 77 so expect to stay this way till the end barring a miracle for which I'm not holding my breath. I thoroughly enjoy life and never feel sorry for myself: I have PN but PN does not have me. GO PNers!!!

NANCY W. · 09-06-2009, 12:14 PM

Quote:

Originally Posted by echoes long ago

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.

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.

darlindeb25 · 09-07-2009, 08:41 AM

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.

Marty SLC · 09-07-2009, 09:31 AM

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!

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