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Went to the Neurologist for my fifth Nerve Conduction Test. It doesn't bother me quite as much as
it used to. I can't believe that I've gotten used to the test. Last year she said that my hands tested
normal and she saw some improvement in my feet.
This year she said she saw SIGNIFICANT IMPROVEMENT in my legs - especially my
left leg! I asked her how many Multiple Sclerosis or Peripheral Neuropathy patients
she had seen improvement in. She said NONE. She said that usually the best they could
hope for was maintaining the same level and that her patients just kept getting worse. (What an
awful job.) I asked her if the reason for my improvement could be the ALA I've been taking for three
years or so. She said she didn't know. I tried to pin her down but she would not commit. She said I
was the only patient she had that had improved and I was the only patient that was taking ALA
consistently.
We talked about how all of the studies were only for three to six months and I suggested that
since I've been taking ALA for so long that perhaps that's what is needed for remyelination. She
only agreed that the studies probably did need to be run for a longer period of time.
I am thrilled however. I know I've been doing better but to get test results that said so really made
me happy.
Here's what's really important to most of you with Peripheral Neuropathy; my pain level is going
down. About eight months ago I had to switch from Oxycontin to the generic oxycodone (for
insurance reasons of course). The oxycodone didn't last 12 hours like the Oxycontin did so for four
hours a day I was in agony. My general practitioner wouldn't increase my prescription from 30mg
two times a day to 40mg two times a day. He would however, give me prescription for Cymbalta
instead of Effexor (antidepressants). Luckily the change to Cymbalta made up the difference and I
didn't get dumb.
Recently however, I've noticed that I'm not in severe pain so much. Pain is so subjective though. I
wish I could measure pain like they measure nerve conduction - with a test. Time will tell. From
what I've read, pain is the last sensation to recover after nerve damage. It figures.
December 9, 2006
Went to my Neurologist for my regular three-month appointment. I told her that my primary
physician had used a paint-brush-like tool to see if I had feeling in my toes and that I had felt the
brush on the toes of my right foot. She checked her notes and said that since I had not had a
Nerve Conduction Test since early in 2005 it was about time to do one again. We scheduled one.
June 2006
Received my Master's Degree in Information Technology. Just proves that I'm doing well mentally.
July 8, 2005
Almost a year has gone by and my improvement has been steady but slow. I am now halfway
through the Masters Degree Program at the University of Phoenix. I am preparing to work full time
upon completion of my degree. I never thought that I would get well enough to work again. I have
had to add a drug to help with the "normal" fatigue of MS and my balance is a little worse but my
feet are better and my thinking is clear. I've even been able to read a few novels for recreation.
My concentration hadn't been good enough in the prior five years to read more than a short article.
For a avid reader, it was like I'd lost a friend when I couldn't read a novel anymore. To get that
ability back was wonderful. Although my latest nerve conduction test was not significantly
improved for my feet, my hands and arms tested normal. Of course, they were the last to be
affected too. If there were a test for the tiny nerves of the skin, I'm sure it would show concrete
improvement in my feet. I'm patient because I know that it took ten years for my surrounding skin
to regain normal feeling after a large surgical scar. If I hadn't experienced that long-term
improvement, maybe I wouldn't be so patient. But I know every day I improve, slowly but steadily.
July 18, 2004
The website work has been going well and I thought I'd take a minute to update my progress.
Yesterday while showering I ran my right, big toe over the self-stick safety strips on the bottom of
my tub. I can now feel the difference between the rough strips and the smooth tub. My left big toe
still can't tell the difference but I'm able to at least feel the presence of the tub. Not bad for
someone who used to have to wear flip-flops in the shower to cushion my tender feet from the hard
bottom of the tub! Not bad for someone who was numb to the ankles before the ALA therapy! I
have to attribute it to the ALA because on just the interferon therapy, I got no improvement in a
year an a half.
June 21, 2004
I no longer take Zonegran! I've been off it for about two months. Because it is a potent drug for
epilepsy, I went off it very slowly over a month's time. I've been taking it about three years and
twice before I have tried to go off of it and my pain doubled. Since it takes about two weeks to
kick in, that meant about two weeks of terrible pain. However, I kept having low-pain days so I
decided to try quitting it again. This time it worked. I kept waiting for the agony to start but it
never came. Not that I'm pain free-far from it. However, I am able to use only Oxycotin for my
pain, 30 mg in the am and 20 mg in the pm with an occasional 15 mg MS Cotin for breakthrough
pain. I was taking 60 mg every day plus the MS Cotin. Why did I want to stop the Zonegran first
rather than the additive Oxycotin? A look at the side-effects convinced me. Zonegran is very
effective for helping with nerve pain but I'm happy I don't have to take it any more. What does that
mean? It means my nerves are healing with the ALA. I've read that pain is always the last of the
nerve senses to heal and it must be true. I've gotten back all of the feeling in my feet now
including hot and cold. If you remember back to high school biology, you probably did a test with
a tiny needle, poking your skin gently to see what sensation you felt. What was felt was hot, cold
or pain depending upon which nerve the tiny needle point touched. Granted, not all of the skin on
my feet feels "normal" but it is improving. Per the Linus Pauling Micronutrient center information,
I have increase my dosage to 300 mg four times a day. It dissipates quickly in the body-thus the
four times a day. Another warning-ALA doesn't work well for all types of neuropathy. It has been
used in Germany for 10 years for successful treatment of Diabetic Neuropathy. Since Diabetic
Neuropathy is a demylinating neuropathy and MS is a demylinating disease, I decided to try it and
luckily it works for me. Not all neuropathies respond to ALA.* I'm sorry. Long-term use is
required. As you can see from this posting, I've been taking it over a year. Nerves grow about
half an inch a year from what I've read so naturally repair would be slow. For $30 a month, it's
worth a try, at least in my opinion.
*Please refer to the Other Neuropathies page.
March 16, 2004
The other day when I was slipping on one of my clogs I noticed that there seemed to be a lot of
texture to the insole of the shoe where I hadn’t noticed any before. I had not yet put on socks
since I was just stepping out of my shower shoes, drying off my feet and going DIRECTLY into my
shoes-do not touch the floor-do not collect $200. I took the shoe off and looked inside. There were
a lot of quarter-inch perforations in the insole material, I guess for air flow. The side facing the
heel was raised from me slipping my bare foot in. That’s what I was feeling. Yes, FEELING! I
was amazed. I could actually feel those small textures on the sole of my feet. Not only that but
the texture didn’t bug the dickens out of me. The last time I felt texture on the soles of my feet
was years ago and it bugged the hell out of me. I remember because I had to get rid of any socks
that had even a slight ribbing on them. All my socks had to have a very even terry cloth texture.
So the feeling I’ve gotten back on the soles of my feet is NORMAL. The same is true of the feeling
I’ve gotten back on the top, middle part of both feet. When I touch the skin there, it feels blessedly
normal. Not prickly or anything. All of this was preceded by weeks, maybe months of annoying
buzzing. That’s the only way I can describe it. The same thing happened when the feeling came
back between my knees and ankles but they were numb for only about six months when I got on
the interferon therapy for MS. That was just a little over two years ago. I haven't had a relapse
since then but have not had any other nerve regrowth or remylination until the last six months.
There has been NO decrease in pain. I have read that pain is the last sensation to heal in nerves
so my expectations are low there. Feeling, hot, cold, everything will heal and finally pain will go
away. I haven't read anything about the begining of nerve damage but I'm willing to bet that it
starts with pain. Actually, I'm kidding there. I do remember that it started with numbness. Last
night I read that only 22% of people with diabetic neuropathy have pain. The other 88% experience
only numbness. Aren't they the lucky ones! Oh well, I just like feeling my shoes and what else
have I got to choose from for about $30 a month. I'm patient. The statistics for remylination for
someone with MS on interferon therapy with no relapses and everything going well is 72%. No
time span was mentioned with that statistic so I could be experiencing the normal remylination
that comes with the interferon therapy.
March 2004 Postings from PN Friends Bulletin Board
First I had "idiopathic" neuropathy for 1 and a half years and then got diagnosed with MS two and
half years ago. From what I've read about ALA, it is a necessary anti-oxidant that is inexpensive
and readily available. Since nerves grow about a half-inch a year, I would not expect nerve repair
to ever be fast. Taking ALA has to be a long term commitment. It is used in the mitrochrondria of
every cell in your body. Also, nothing can help PN unless the cause of the damage is removed.
That is why I must stress that my MS was in remission. I do not now have nor have I had any
active lesions in my spine for the last 2 and a half years to cause any further nerve damage or
demylination. The medication to keep me in remission is $1,500 a month but worth every penny.
My insurance company might disagree.
(What I did not mention because the site is for PN only, is that three months after starting the
therapy, I found a vast increase in my intelligence, memory, brainpower-whatever you care to call
it. People with MS know that it affects the brain but little of that is mentioned. It's just
embarrassing! My IQ upon testing was just one point less than when I took the test as a
teenager. Sure do wish I'd taken it before the ALA therapy as a measure of comparison. That was
not an effect that I had even anticipated! Hey, before that I couldn't figure out how to do a website
even though I had done computer programming for years. If nothing else happened I was happy.
But read on...)
This site exists in the hope that you will get the same results.