NeuroTalk Support Groups - Neuropathy does improve

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- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Neuropathy does improve (https://www.neurotalk.org/peripheral-neuropathy/43699-neuropathy-improve.html)

Quote:

Originally Posted by Dr. Smith (Post 880426)

Thought I'd add my 2¢ to this thread, FWIW. I'm getting better, little by little. It's a journey, with hills & valleys, hazards, roadblocks, detours, etc. Hope & Heartbreak.

At my worst, about a year & a half ago, I had all the classic symptoms: numbness, pins & needles, cramps, electric shocks, needle jabs, burning pain, hypersensitivity. Numbness extended halfway up to my knees. Moderate peripheral edema extending halfway to knees.

About that time I began my regimen of methyl B12, & RLA. Tried some others that didn't seem to have any effect, so stopped those, and tried others. Still trying/rotating supplements. Also on High Protein/Low Carb diet - little/no sugar - sugar exacerbates symptoms.

IMO, from what I can tell, RLA, B12, & B5 have been most beneficial to me. Burning pain has been pretty much gone since beginning RLA w/ some tolerable flares. Have a prescription for gabapentin, but have not taken/needed any since beginning RLA. Numbness, pins & needles, cramps, electric shocks, needle jabs all greatly improved. Remaining symptoms now confined to front half of feet. Still have some hypersensitivity in feet, some cramps, occasional "rudeness" of the feet. Still have moderate peripheral edema extending halfway to knees. Massaging helps both edema and PN.

I feel I have pretty much attained my initial goal of arresting/stopping progression, and am now looking into pursuing healing/neurogenesis.

Doc

I'm always interested in hearing about others who have made progress in arresting the progression of PN. You mentioned the hills and valleys, hazards, road blocks etc. along your way.

To me that is the hard part in determining if you're getting better. The improvements are sometimes so slow that you measure it in months or even years rather than weeks.

As you started healing did you experience periods where it seemed that it was maybe getting worse instead of better? Did the flares slow down for a considerable period of time where you thought you making notable improvements only to have them come back and stay on for a near equal amount of time? I have experienced these effects (but not so much lately) which put some doubt into my mind that I was improving to any significant degree.

I know things have improved for me especially lately, but that kernal of doubt seems to rise up with a series of flares that come out of no where. I know the diary is the best way to gauge progress, but I would be interested to hear your thoughts.

Quote:

Originally Posted by karsten (Post 880668)

As you started healing did you experience periods where it seemed that it was maybe getting worse instead of better?

Yes, that would be the hills & valleys. I could have stated it as 3 steps forward and 2 steps back, etc.

My flares have been diminishing in frequency, duration, and severity as I've learned about this ailment and figured out clues & triggers applicable to myself. I got into some sweets earlier this week (incorrigible chocoholic/sweet tooth) and I'm paying for it now. :rolleyes: / :o

My expectations for healing are... humble. I'm probably in a bargaining stage right now, so I'll take what I can get. Tomorrow (metaphorically) I may reach beyond my grasp. One day at a time. ;)

Doc

My PN just slowly got better. I would have times, only minutes, when I would have a bit of pain in my feet, then it was gone. I think the nerves were healing. I mostly just improve with no pain. I take so many supplements and foods that heal and no sugar, low carbs that it has all been a great slow improvement. I am thankful.

Before, I would only wear my UGGS to walk since my feet felt funny. I now walk barefoot on my wood and tile floors and it doesn't feel weird! It feels GOOD! :p

July 2012 will be the second anniversary of my diagnosis. My PN has not gotten better yet, but I am hopeful. So far, the only relief that I get is in winter. When the temperatures are cooler, my symptoms are less pronounced. However, my symptoms in summer seem to be getting a little worse each year. Maybe it is because summers are getting hotter each year. I do not know. Also, I find it more and more difficult to walk for very long because of the pain and dysfunction (feels like I am flatfooted) that walking brings on.

But how can I complain when there are some among us who are completely debilitated by their illness, and I am not there yet.

Quote:

Originally Posted by Nervous (Post 881208)

Hi Nervous,

Hope springs eternal. I, too, am hopeful that things will get better.

Last winter was my first winter with PN and it was extremely difficult for me to wear heavy clothes. Or, even just light sweaters, or just anything that touches my skin for that matter. I prefer the season now for the simple reason that I can wear less clothes, e.g. shorts and sleeveless. I have very hypersensitive skin and painful feet. I also could not walk and stand for a long period.

What are you symptoms? What supplements do you take?

I have a list of symptoms and of supplements. I'll have to get back to you on all that. But I appreciate your concern.

Things may get better for me. Or they may stay the same. But I am past the panic and fear over the fact that they might get worse. My affairs are in order, so I can take what comes, one step at a time.

This forum, particularly mrsD, have been a great help. I am easily discouraged by doctors — who, as everyone here knows, are inadequate — but NeuroTalk has been a substantive help and I am grateful.

Cheers. :)

Improvement can be Relative

I think "improvement" can, and should, be viewed in different ways.

Quote:

Originally Posted by Dr. Smith (Post 880426)

I feel I have pretty much attained my initial goal of arresting/stopping progression, and am now looking into pursuing healing/neurogenesis.

For someone whose PN is advancing spreading, slowing or halting progression is improvement.

For someone whose progression is halted/stable, lessening of one or more symptoms is improvement.

For someone whose symptoms have lessened, regression is improvement.

Quote:

Originally Posted by Nervous (Post 881367)

Things may get better for me. Or they may stay the same. But I am past the panic and fear over the fact that they might get worse. My affairs are in order, so I can take what comes, one step at a time.

Getting past any kind of hurdle, like panic, fear, & negativity is improvement.

Setting goals and achieving them (small steps) is improvement.

Adopting a positive attitude/outlook is improvement, and every little improvement is cause for further positive outlook, which is further improvement.

Improvement is where we find it. :Clever: Sometimes we don't notice it unless we look for it.

Doc

Quote:

Originally Posted by Nervous (Post 881367)

I will glad to hear about your symptoms and supplements, and compare notes.

Hi,
I'm new to the forum. Where would I find the stickies?

Thank you,

Quote:

Originally Posted by Wing42 (Post 260144)

in spite of a negative prognosis from three neurologists. I was in severe pain and burning for years, with loss of balance, foot drop causing frequent stumbles, no ankle reflex in left and 50% in right, and hardly able to walk. The pain ranged from 6-8 on the 0-10 scale with breakthrough pain at 9 or 10 experienced as either electric zaps, or feeling like a carnivorous worm was eating at my toe and metatarsal joints. I also had extremely hypersensitive skin, and other areas where the skin was numb enough to stick a pin in.

Now, I walk or hike an average of 12,000 steps a day on my pedometer, have wonderful balance (not as good as in 1992, but I'm 65 yrs old now). My pain ranges from 0 to 4 with very occasional breakthrough pain in the 6 or 7 range, about 2 now as I type this. Both ankle reflexes were measured at 100%. There are still some mildly numb skin areas, but almost no hypersensitivity. I still show some neuropathy when tested with two points, tickle, and vibration. EMGs and nerve conduction tests have always been normal since my PN was small fiber sensory.

OK, it's not healed, but I can happily go through the rest of my life like this. No longer does the pain wakes me up, stop me from walking or driving, and is never so bad that it's hard to concentrate.

The program I've followed all these years is on page 3 :confused: of the stickies. There have been changes to it the past couple of years, but the the essential program hasn't changed. It's a hassle to edit old postings on this forum, but I'll work with a moderator to do so one of these months.

A CHANGE: I meant page 2 of the stickies. The neuropathy must be affecting what remains of my brain. :o

Since the poster you are requesting has made his contribution here, YEARS ago, there have been many others and newer information available here.

Here are his two stickied posts:

http://neurotalk.psychcentral.com/post9580-18.html

http://neurotalk.psychcentral.com/post9583-19.html

But you are welcome to read our subforum which has grown quite a bit since 2007.
Go to the main Peripheral Neuropathy page and the link to the subforum is at the very top.