I was partially diagnosed last year and have so far opte...

Brain and nerves
1

I was partially diagnosed last year and have so far opted not to pursue a conclusive diagnosis. I have enough information to explain what seemed like a truly random set of symptoms and to be honest, I am not sure that I want a cast-iron diagnosis!

My initial symptoms could have started as long ago as 2000 but each was dealt with individually and passed given time. I am fortunate that I don't seem to have very severe attacks, although my first "go" at opticla neuritis was interesting to say the very least.

Having had an MRI scan and seen a Neurologist, there is evidence that de-myleniation has occurred, but as I am dodging the lumbar puncture for now (and even if I weren't the results may still be less than conclusive) we don't know anything for sure.

Ocassionally I lose the sensation in my fingertips, and that has been known to spread along the length of one or both arms and across the chest wall. My balance has been off for years, to the extent where I just assumed I was clumsy but this too comes and goes. The most irritating symptom at present is a permanent itch on the arch of my left foot.

I can completely sympathise with those who have felt like a hypochondriac when a set of seemingly unrelated symptoms won't disappear and leads to trip after trip to the GP. And also when those around you (probably not friends)feel the need to compete with your symptoms. To be honest I guess these people are trying to make me feel better by playing things down.

I worry that I am putting my head in the sand a little about this, but a year on I am in better health and infinitely less confused about my symptoms, and once I get to grips with the fatigue, I will be much happier. My GP recommended Ginseng which certainly seems to have taken the edge off it.

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2

I recommend to you that you get a definate diagnosis so that you can begin treatment. My neurologist never did a lumbar puncture. He said it wasn't necessary for diagnosis. I was originally diagnosed 3 yrs. when I was 27. I have had 2 MRI's of my brain and spinal cord that have revealed a few lesions on my spinal cord. The only symptom that I've had so far is numbness and abnormal sensation to the right side of my body which was the initial exaserbation that lasted a couple of months. Since then, I've been fine. The earlier you can get on treatment to decrease the chance of disability, the better.

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3

I understand the head-in-the-sand thing, I've done it too. But you absolutely must get a diagnosis, and get treatment. Ignoring MS will not make it go away. You feel better because you are in remission, that's how relapsing/remitting MS works. But it will return, and if you get treatment now you stand the best chance of getting a less severe disease course.

Good luck!smile

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4

I felt your experiences as you wrote them were nearlly all very negative. My suggestion is to 'attack' this situation head on, get a diagnosis, accept was has been said as true, accept what you have and deal with it, i have been diagnosed since 1996 although my first atach happened in 1982 when i was 23ish. accept that you can be clumsy, even stupid at times but above all LAUGH AT YOURSELF, YOUR ACTIONS AND SO FORTH. People will learn about ms and that it does not have to be seen as a crippling disease. Take one day at a time. Good luck.:lol:

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5

Does this sound like MS; I'm in two minds about pursuing a full diagnosis

First, I've had Hep C for decades. Part of that (I thought) was a fluey, fuzzy feeling in the skin. But then I found that antioxidants could fix the Hep C symptoms, yet I was left with that fluey feeling. It comes and goes.

At one stage switching to alpha-lipoic acid and selenomethionine (instead of sodium selenate) improved it a lot. But after a lot of hard work last winter - and taking resveratrol, which seemed to trigger it - I had an attack of optic neuritis with parasthesia, that only slowly got better.

(I learned since that resveratrol elevates oxidative stress inside the blood-brain barrier. Enzogenol has the opposite effect.)

Later, ginseng, codyceps and astragalus have relieved much of the parasthesia. I also take ginkgo, gynostemma, green tea (besides the antioxidant nutrients for Hep C). I have added these bit by bit and kept them if they seem to help and don't cost too much. Grape seed extract, 300-600mg daily has really helped my vision; sometimes the ghosting disappears altogether for a few hours. I am going to try acetyl-carnitine. But it is worth recording the symptoms I have without ginseng; I wake up in the mornings with my little fingers swollen like balloons. That is what it feels like - it looks normal. This kind of numbness, and the more unpleasant prickly feeling, has gone away - now, I am only slightly aware that my skin feels weird. My sense of touch is OK, my sense for hot & cold very good, so it's hard to define what is wrong. My muscle tone and balance is very good, I have energy, my brain is clear but I attribute that to the Hep C antioxidants. - before I took them my head was cloudy, my muscles ached, etc; everything but the optics.

Is it normal to have sensory and optical neuritis without loss of muscle tone? Or can this something like MS but seperate?

6

Check the Low Dose Naltrexone (lowdosenaltrexone.org/ldn_and_ms) website

low-dose Naltrexone is a very cheap and effective therapy for many auto-immune diseases. It seems to be just as effective in MS.

It works by elevating endorphins, which are immune regulators as well as painkillers. You take a small dose at night (3mg for MS) and it temporarily blocks endorphin receptors while you sleep; the body makes more endorphin to compensate. It seems ridiculously simple, not to mention inexpensive. But when you consider that giving morphine (which has the opposite effect to naltrexone) after cancer surgery dramatically increases the chances of cancer returning (tramadol doesn't have this risk) you can see that there is a rational basis for it.

If I wasn't on methadone, I'd have taken LDN long ago. As it is I'm on a decreasing dose so I can take it in a few years time (if I took naltrexone now I'd just go into opioid withdrawals, as it would block the methadone at the receptors). I'm hoping that the reducing dose of methadone has some of the endorphin-stimulating effects of naltrexone.

I knew a guy who was on methadone and was diagnosed with a brain tumour, we all though he'd had it and were surprised that he came off methadone, instead of getting more drugs for his pain. But he's still alive and healthier than ever since withdrawing off opiates.

Here's some info from the low-dose naltrexone website:

The following excerpted posting, written by the chief pharmacist of Skip's Pharmacy of Boca Raton, Florida, appeared on a different website:

From: Dr. Skip

Subject: Naltrexone

Date: October 23, 2003

As I have said before, if I had MS, the only drug that I would absolutely be taking is LDN..... In 4 years of dispensing LDN, with over 10,000 patient months, I have heard of only three cases of exacerbation... this is truly a no-brainer. I would find someone to prescribe it no matter the cost or effort.

Skip Lenz, Pharm. D.

Naltrexone was licensed in 1984 by the FDA in a 50 mg dose as a treatment for heroin addiction. It is a pure opiate antagonist (blocking agent) and its purpose was to block the opioid receptors that heroin acts on in the brain. When it was licensed, Dr. Bihari, then involved in running programs for treating addiction, tried it in more than 50 heroin addicts who had stopped heroin use. None of the patients would stay on the drug because of side effects experienced at 50 mg such as insomnia, depression, irritability and loss of feelings of pleasure, all due to the effect of the drug at this dose in blocking endorphins. These are the hormones in the body that heroin resembles. Physicians treating heroin addicts therefore, for the most part, stopped prescribing naltrexone. In 1985, a large number of heroin addicts began to get sick with AIDS-studies showed that 50% of heroin addicts were HIV Positive.

Dr. Bihari and his colleagues decided to shift their research focus to AIDS, in particular focusing on ways of strengthening the immune system. Since endorphins are the hormones centrally involved in supporting and regulating the immune system, levels of endorphins were measured in the blood of AIDS patients. They were found to average only 25% of normal.

Naltrexone, when given to mice and people at high doses, raises endorphin levels in the body's effort to overcome the naltrexone blockade. This drug became the focus of Dr. Bihari's research group. When the group discovered that endorphins are almost all produced in the middle of the night, between 2 AM and 4 AM, the studies focused on small doses (1.5-4.5 mg at bedtime) with the hope that a brief period of endorphin blockade before 2 AM might induce an increase in the body's endorphin production. In fact, the drug did so in this dosage range. It had no effect below 1.5 mg and too much endorphin blockade at doses over 5 mg. A placebo-controlled trial in AIDS patients showed a markedly better outcome in patients on the drug as compared with t

7

[quote:fb6cf44932=\"J. \"]I recommend to you that you get a definate diagnosis so that you can begin treatment. My neurologist never did a lumbar puncture. He said it wasn't necessary for diagnosis. I was originally diagnosed 3 yrs. when I was 27. I have had 2 MRI's of my brain and spinal cord that have revealed a few lesions on my spinal cord. The only symptom that I've had so far is numbness and abnormal sensation to the right side of my body which was the initial exaserbation that lasted a couple of months. Since then, I've been fine. The earlier you can get on treatment to decrease the chance of disability, the better.

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