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Old 12-10-2015, 10:21 PM #1
Blue7 Blue7 is offline
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Question Does small fiber neuropathy heal completely

I got mines from a cocaine relapse. It's asymmetric and hurts. Gabapentin hasn't helped, I've done the vitamin thing and it only helps a little. I'm 18 months out already. Is this a death sentence? Have there been any success stories? Is this condition linked with suicide? I'm only 31 and feel like I'm 80 yrs old. Will I be able to have a job again? Date and live life again? May God help me.
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Old 12-11-2015, 04:37 AM #2
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GS
Quote:
Originally Posted by Blue7 View Post
I got mines from a cocaine relapse. It's asymmetric and hurts. Gabapentin hasn't helped, I've done the vitamin thing and it only helps a little. I'm 18 months out already. Is this a death sentence? Have there been any success stories? Is this condition linked with suicide? I'm only 31 and feel like I'm 80 yrs old. Will I be able to have a job again? Date and live life again? May God help me.
Blue7,

In Time it Will improve i got my pn from medicine use but hear what Your saying This thing van make You feel old and take all the joy out of Your life
Currently there are some developments but i suspect it Will take a long Time to hit the market.
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Old 12-11-2015, 07:55 AM #3
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Quote:
Originally Posted by Blue7 View Post
I got mines from a cocaine relapse. It's asymmetric and hurts. Gabapentin hasn't helped, I've done the vitamin thing and it only helps a little. I'm 18 months out already. Is this a death sentence? Have there been any success stories? Is this condition linked with suicide? I'm only 31 and feel like I'm 80 yrs old. Will I be able to have a job again? Date and live life again? May God help me.
It will improve. I have periods where i feel almost like I am making huge progress, then i might have a period where stress sets me back. Stay strong, it is a slow go. I have heard people say it CAN heal and people insist that it can't. I guess its all relative to what caused it. The medicines will not treat the pain effectively. You will be lucky to come out with a reduction in pain. For some people they don't work at all.

It is not a death sentence unless you decide to take it to that level.

There have been success stories out there though. Some have been posted here. NERVES CAN HEAL. But it is not like a broken bone, it takes years. At least that's what the optimistic doctors say.

I say, Stick with the vitamin regimen and up the dose if ya need to. Benfotiamine, B-12, R-Lipoic Acid, Acetyl l Carnitine, Evening Primrose oil, Grape Seed extract...Cut down on sugars and simple carbs, be careful of certain fruits and vegetables that have a lot of built in sugar. GOtta get the body from starting any unnecesary fires inside that will set off those damaged nerves.

The condition is becoming more common. Especially with the rise of diabetes in the World. We will see new treatments coming down the line.

For me, prayer and scripture is helpful as well. not preaching to you but throwing it out there. If meditation, other internal study or another source of deep consciousness is something you're comfortable with go to it.
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Diagnosis: Idiopathic Small Fiber Neuropathy (Statin Induced)




• R-Lipoic Acid: 100mg - 300mg Daily
• Acetyl-L Carnitine: 1500mg Daily
• Vitamin B12: 1000 mcg Daily
• Magnesium 500mg Daily
• Grape Seed Extract 200mg Daily
• Benfotiamine 300mg daily

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Old 12-11-2015, 01:20 PM #4
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Thumbs up How about limited success

Quote:
Originally Posted by Blue7 View Post
I got mines from a cocaine relapse. It's asymmetric and hurts. Gabapentin hasn't helped, I've done the vitamin thing and it only helps a little. I'm 18 months out already. Is this a death sentence? Have there been any success stories? Is this condition linked with suicide? I'm only 31 and feel like I'm 80 yrs old. Will I be able to have a job again? Date and live life again? May God help me.
I went down to using a walker and was thinking wheelchair. At about 2 yrs out mt legs started getting stronger(my b-12 was on the floor to start) now I can walk free but not over 200 yards or so at a time. I hope you are not drinking Alcohol and I hope you know what your b-12 number is. That b-12 is not a "thing" my number went from 119 to 900+ and my legs got stronger. They are not still getting better as there has been no more improvement for 6 to 8 months now. The panic of newcomers and the sense of loss associated with this condition both drive some people to thoughts of suicide. Most usually just get really pi%^*(d off. Fine tume their diets and get as much exercize as they can tolerate. Your symptoms will change with time so don't feel that anything is permanent. I cannot do the job I did for all my life, get paid for my experience because I cannot climb oil production tanks anymore. I have since trained to be a dispatcher at one of those shale fracturing outfits. So yea there are jobs out there that may be different but change is always hard. If you can look around and count a blessing I feel that yes indeed God will help you. Good Luck, Ken in Texas.
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Old 12-11-2015, 01:47 PM #5
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It can indeed get better. How much and in what way - healing is rarely a linear progression - depends on the cause, the extent of damage and what the person is willing to do to correct it. What's done is done, and can't be changed, but it's in your power to do what you can to heal. Diet is essential, as is supplementation and exercise. The mind and body, a united whole, need to both be treated and healed, so meditation, or other forms of stress reduction and relaxation, are essential too. Coming to terms with what has happened is difficult and you may never be OK with what you've lost, but you have much more to lose and can do something about that, if you act. At least that's how I think about it, and I've seen great improvements overall from where I was when it first happened. Best of luck!
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Old 12-11-2015, 06:01 PM #6
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I'm going to try and hold on for as long as I can. Does anybody know about ivig? What would I need to qualify for it and does it work?
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Old 12-12-2015, 12:39 PM #7
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Thumbs up It goes with a perticular diagnosis

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I'm going to try and hold on for as long as I can. Does anybody know about ivig? What would I need to qualify for it and does it work?
That much I remember. If you hit the search on top of this page and type IVIG and see if that brings it up. Good Luck, Ken in Texas.
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Old 12-13-2015, 10:44 AM #8
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I'm going to try and hold on for as long as I can. Does anybody know about ivig? What would I need to qualify for it and does it work?
IVIG can help when the cause is autoimmune
It takes time to find treatments and adjust, don't loose hope
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Old 12-17-2015, 04:53 PM #9
JoannaP79 JoannaP79 is offline
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IVIG can help when the cause is autoimmune
It takes time to find treatments and adjust, don't loose hope
Bo hoo, I get upset hearing this as I just know mine is autoimmune as I already have another autoimmune problem. My latest neuro visit concluded with ' ivig is not licensed for use in cases of sfn' - take more tramadol, dribble in front of tv and see you in 6 months, bye! :-((
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Old 12-17-2015, 05:45 PM #10
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I hear you. I'm in the same or I think similar boat. I'll find out when I broach the subject with my neuro the next time I see him. I'm not sure what he'll say. I can be pretty convincing though and rarely take no for an answer, but that may mean nothing, if it's just not possible for SFN.

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Originally Posted by JoannaP79 View Post
Bo hoo, I get upset hearing this as I just know mine is autoimmune as I already have another autoimmune problem. My latest neuro visit concluded with ' ivig is not licensed for use in cases of sfn' - take more tramadol, dribble in front of tv and see you in 6 months, bye! :-((
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