September 25, 2010
Went scooterless to an air show with my husband for the first time in ten years. Walked all over on just a normal day's
dose of pain medication. What I'm taking now is just 1/3 of my highest dosage. Still need the break-thru pain pills on
occasion but IT IS GREAT TO WALK WITHOUT PAIN!!!
March 10, 2010
When I slipped off my slippers this moring in preporation for my shower, THE FLOOR FELT COLD! I turned the water on
hot in the shower and the water felt hot as it pooled around my feet. After ten years I had temperature feeling in my
feet! Yes, I had that tested a long time ago. I also inadvertently tested it once by burning the heck out of my foot by
accident. Guess I have to wear shoes in the snow now (lol).
Started on Copaxone injections. The dose is too much for me and I got a yeast overgrowth in and around my nose
(amongst other places!). I started using a half-dose and symptoms subsided and my co-pay cost of over $600 a month
cut in half too. I did this only after much research.
Had my first relapse since coming down with MS. My pain was horrible. I had to take four break-thru pain pills to
control it. Luckily it lasted only a few weeks.
Been having a lot of trouble with my complexion. My family physician noticed that the "pimples" formed in lines. She
sent me to a dermatologist. He said on the second visit to use the antibiotic cream in the morning and the cortizone
cream in the evening. I knew he was floundering and went to another dermatologist and he was also stumped in spite
of many core samples (aka biopsies). I developed a lump in my lower lip and went to a plastic surgeon to get it
removed. The biopsy result led me to Lupus. I looked up my symptoms and combined the word Lupus with the drugs I
was taking and found out that there was a rare side-effect of long-term Betaseron (interferon) use - drug induced
Lupus. My neurologist agreed with my self-diagnosis and took me off Betaseron for a few months so I could switch to
December 19, 2006
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.
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
*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.
This site exists in the hope that you will get the same results.
Qualifications: B.S. in Business & Masters in Information Systems