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How an Overlooked Drug Relieves Cancer, AIDS, MS, and Immune System Disorders for a Dollar a Day

1. “Your watch is on too tight.”

I stared at my wife in stunned disbelief. She returned my stare followed by a shrug.

This diagnosis was made by the sweet middle-aged lady doctor at the Santa Cruz medical clinic, urgent care.

“I can’t see how that makes much sense; I’ve been wearing this watch for years. It has a Velcro strap, and I never make it too tight…”

The doctor pointed to a slight pink mark that remained where my watch had once been strapped.

“Can’t you see? It’s left this mark…”

“Yeah, but I really don’t see how that could have made my whole arm go numb…”

“Oh, it most certainly can…” She assured me. “Let’s see how it feels tomorrow. If it doesn’t get better, come back.”

On one level, I knew this diagnosis couldn’t be right. After all, the problem had begun over a week ago, when the inside of my thumb began to tingle. Then the tingle started spreading to my other fingers. Day by day it kept getting a little worse until the whole hand became numb followed by the inside part of my arm.

But when it comes to health, the old adage “hope springs eternal,” comes into play very heavily. I glanced at my wife again, “Who knows? Maybe she’s right. That sure would be great if she was…”

Sadly, the “tight watch” diagnosis didn’t even make it through the night. By the time I went to sleep, it was already clear to me that I was getting worse even without wearing a watch.

The next day I went to our chiropractor who adjusted me and tried to help. A day later, I was back in his office. His treatment had done nothing to make me better and after trying a few more things he started to look worried. “I don’t think this is something I can help you with. Have you got a good M. D.?”

I told him the story of the tight watch. I didn’t have my own doctor, only urgent care. He referred me to a doctor he trusted.

It took another two weeks of doctor’s appointments before I finally ended up at the neurologist’s office. By now, my arm from the shoulder down was completely numb, and unable to function properly. I didn’t seem to have any strength in my left-hand at all. I began to drop things all over the place. When I tried to open a can of Coke while holding the can in my left hand, the can broke free from the pressure of trying to open it. It fell on the floor and squirted all over the place.

The only part of my hand I could now feel were the thumb and forefinger. I couldn’t really feel anything from them, but they were very stiff. The effect was sort of like having a disembodied lobster claw hanging in front of my body.

After doing a bunch of physical tests, he sent me to have an MRI. The results showed that my brain and spinal cord both had lesions on them. The neurologist told me it looked like I might have multiple sclerosis.

Six years earlier the same neurologist had treated me for a condition called “optic neuritis”. One of my eyes had stopped seeing color and was only seeing sepia. He had ordered an MRI then too, but the pictures had come back clean.

Once again, hope springing eternal had been my undoing. When the neurologist told me that the MRI showed neither a brain tumor nor MS lesions I was naturally very relieved. He told me that sometimes, albeit rarely, optic neuritis could show up on its own. He said it should straighten itself out in a couple weeks. What he didn’t tell me was what other symptoms to keep my eyes open for in case it was MS.

After having spent the previous night praying I had MS rather than a brain tumor, I was so relieved at this news that I just put the whole episode behind me. I didn’t do any real research on MS. When the optic neuritis got better, I just forgot about the whole thing.

Three years later my right hand went numb a bit. I went to the chiropractor whose treatment didn’t seem to help much, but the condition cleared itself up in two weeks so I once again forgot about it.

The bottom line was that I had been suffering from MS for at least six years without treating it at all.

After four IV infusions of steroids, and three weeks of steroid pills I got back about 60% of the feeling and use of my left hand. This was four months ago and it hasn’t gotten any better since. I’ve had to come to terms with the fact that it probably never will. But that’s not all I’ve had to come to terms with.

Please bear with me here as I tell you about Multiple Sclerosis. I know it’s a bummer, but it’s important if you are interested in understanding my motivations in this tale.

Multiple sclerosis is currently not curable with western medicine. The scientists don’t really know what causes it. The consensus seems to be that it is an autoimmune disease, though a significant number believe it to be something else.

The three standard treatments each offered to reduce the number of relapses by 20 to 30%. A new more dangerous treatment promised a 60% reduction.

I started doing my research in earnest. It looked like I was really pretty screwed. Because I was diagnosed so late (I was 53), and because I was male, the prognosis was particularly bad. Let’s see… according to Wikipedia MS patients die on average only eight years younger than healthy people. Great! At least it’s not a quick death sentence. Less great, 50% of MS patients die from the disease. Even worse, 15% of MS sufferers die at their own hand.

So basically, it was only a question of time until I would be crippled. If the last attack had hit my leg rather than my arm I already would’ve been in a wheelchair.

Around the same time as my optic neuritis I had come down with a very heavy case of depression. I realized I was having mental problems when I stood in my closet for five minutes trying to decide what shirt to put on. The problem was I really didn’t care what shirt I wore, I just found it impossible to make up my mind.

I did a search for this symptom online and I turned up depression. Me? Depressed? No way. Back then I thought that most cases of depression were simply the result of weak willed people unable to deal with getting old. In fact, I used to joke that depression was a euphemism for being over 45.

Just to be sure, I took an online depression test and I answered honestly. I scored one level above the lowest, which is considered suicidal.

After six months of talk-talk therapy not only was I still depressed, but I began to suffer from awful panic attacks. Finally I got a prescription for Prozac and Xanax which alleviated the worst of the symptoms.

Now, six years later, it was all beginning to make sense. Depression is listed together with optic neuritis as one of the commonest symptoms of MS. Other things began to make sense as well.

For at least six years I had been having problems holding back my urination. From the time I first noticed that I needed to pee till it became an emergency became shorter and shorter. I thought, “Uh oh… prostate!” I went to the urologist expecting to be told I had an enlarged prostate. Instead, he said to me “You have a young man’s prostate…”

“Well, then what is causing this pee-pee problem?” I asked.

“It could be a lot of things. Can you handle it?”

“Sure… no sweat!” I was so relieved to have once again evaded the silver bullet that I left it at that. So every once in a while I have to pull the car over to relieve myself. So what…

Now I was finding out that this was also a classic symptom of MS.

But worst of all I’ve found out about the cognitive effects of multiple sclerosis.

I had noticed, as had my family and friends, that I had gotten exceptionally absent-minded over the last few years. This wasn’t the usual absentmindedness… forgetting where you left the keys or the like. This was walking into a room to do something and suddenly realizing you had no idea why you were there. The only way I could figure out what it was to re-trace my steps in to the room from which I’d come. While this sort of thing happens to everybody at some point, especially older folk, it had been happening to me four or five times a day.

Two years ago I had made up with my friend Andy Goldberg that I would pick up his seven-year-old daughter from town. I simply forgot to do it. Luckily, someone else covered for me, so there were no tragic consequences. But from that point forward, Andy wouldn’t trust me with important things, and I could hardly blame him.

The other thing I had noticed about myself was that I no longer enjoyed setting up computer/Tech stuff the way I used to. I would buy something new and it would sit on the shelf for weeks before I would deal with. I also kept trying to get my older son, Barak, to do it for me. I chalked this up to getting older. Older people tend to be technophobic, and I supposed that that was beginning to happen to me.

It took a new incident after I had already been diagnosed with MS to make me look into the cognitive issue.

I was in town when I got a call on my cell from Andy. He invited me to come over to his house to watch the Democratic debate. I was really glad to do this having not seen him in a while, and I look forward to watching the debate with someone so smart. (He is an Englishman who graduated from Cambridge.) I made up with him that I would go to my house first to help my wife Susie with a few things, and then I would come to his place.

I got home, I helped my wife, and I sat down to watch the debate.

I had no idea that I had forgotten about Andy until the following morning. Driving home from taking my son Zohar to school, I came to a fork in the road. One way would take me home; the other would take me to Andy’s. It was only then that I realized that I had forgotten to watch the debates with him. This really scared me. I had so wanted to go! How could I have forgotten?

Back to the Internet for more research. Lots and lots of material on the cognitive impact of multiple sclerosis. Here’s a quick summary from the national MS Society:

Cognitive Functions Affected in MS

In MS, certain functions are more likely to be affected than others:

* Memory (acquiring, retaining, and retrieving new information)
* Attention and concentration (particularly divided attention)
* Information processing (dealing with information gathered by the five senses)
* Executive functions (planning and prioritizing)
* Visuospatial functions (visual perception and constructional abilities)
* Verbal fluency (word-finding)

It seemed clear to me that my memory problems and inability to deal with tech was also a result of the MS. In fact, everything bad that it happened to me over the last eight years or so could be laid at the footsteps of multiple sclerosis.

The notion of degenerating into a blithering idiot appealed to me even less than the notion of ending up in a wheelchair. In fact it freaked me out. If I have any sense of personal identity, it’s tied up with my intelligence. The thought of losing that made me understand the 15% suicide rate among MS patients a little better.

Once again, doing my own research, I discovered that there was a new drug called Provigil that helped keep one alert without the bad side effects of amphetamines. I got my doctor to prescribe it for me, and it has helped me a lot. Maybe a 50% improvement. I wasn’t getting lost quite as often.

Unfortunately, my executive functions are not helped by the drug at all. My little boy had to help me assemble a new wagon I had bought for him. The five pages of instructions and the tens of screws, nuts and pieces brought my brain to a grinding halt.

Oh, Hell! How was I going to deal with this? My poor family. The last thing I wanted was to become was “the sick man at home,” a burden and a source of guilt for all of them.

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April 18, 2008 - Posted by | Uncategorized | , , , , , ,

6 Comments »

  1. As someone who’s lived with MS for 10 years, I found this to be like reading from my own journal, almost.

    I am most afraid of what’s happened to my mind, as I have always been intelligent. Now I feel less than…

    But I look normal, walk normal, I just don’t FEEL normal. Take care of yourself, and keep writing. -Jen

    Comment by Feisty | April 18, 2008 | Reply

  2. Hi, got your blog from PLM – you certainly have a way with words 🙂
    Its a funny thing heinsight – i look back and realise how many of my bizarre quirks are actually more than likely related to MS. I hate the most the cognitive effects that at 23yrs old have rendered me stupid on a daily basis.
    At least we have each other to teach and be taught by.
    thank you for writing.

    Comment by Tigerdreaming | April 18, 2008 | Reply

  3. Hi,
    I just thought a quick note of thanks over your video, having been taking L.D.N for well over a year and writing to you a moment with a terrible cold BUT I agree with everything you said in your video
    I too was diagnosed with primary progressive MS about 15 years ago and I progressed down and down and down and got so bad I decided I would have to take my medication into my own hands an extremely difficult thing to do in England as we have a socialised medicine system where the doctors still know best and patients appear to be problems to some of them that interrup their holidays (only joking)
    Everything you said on your video I empathise with and as L.D.N has been such a saviour to me I have made it a point to spread the word.
    If you look at the link I posted for the website you will understand that I have had some reasonably high publicity effects and can certainly get the right ears.
    I do have concerns over your idea to extend or reissue patents when they are expired as although that might work in the States I am afraid that with the success of L.D.N being heralded widely it will take on those same amount of forgery corruption and mis-selling as has Viagra etc
    if the patent can allow the price to be kept as low as it currently is then there would be no incentive for the counterfeiters to move in on it,
    I do not understand why L.D.N has to be on prescription I wonder if that is the other way to tackle it because certainly in the UK you can’t buy aspirin in more than packs of 30 which effectively stops self harm.
    Viagra is certainly is on prescription because of the danger to heart cases and yet I am sure that it is freely available off the Internet in all the countries in the world.
    You may be pleased to know that as a direct result of me having my medications checked by a Polish pharmacist he did not understand what L.D.N was all about so I sent him lots and lots of information by e-mail and he now tells me that there are 10 people with MSN in Poland now receiving LDN
    Keep up the good work and I shall keep on raising awareness as much as I can within the UK where unfortunately zeal like yours is often misunderstood and disregarded

    Regards

    Terl Bryant

    Comment by Terl Bryant | January 5, 2009 | Reply

  4. I wanted to add my enthusiastic agreement to all that is being said about LDN. I actually had heard of it a couple of years ago, but it seemed too good to be true and besides, I was doing pretty well with Copaxone. I can’t thank my lucky stars enough the day last spring that I lost my insurance and had to give up that desperate hope that Copaxone was actually doing something for me, as I slowly lost the ability to do just about everything, especially think.

    I started LDN May 1, 2009 and went from nearly bed bound to riding horses in the mountains of Colorado by the middle of June, and I am over 60.

    It has now been six months and the improvement has continued. The latest to go has been the hyper sensitivity to heat. Ten minutes of over heating used to lay me up for two days. By September, it would make me a bit tired the next day. Now, I just lose sensation in the fingers, which is nothing compared to what it used to be.

    Thanks again and again for continuing to get the word out there. I have started a website of http://www.LDN-Resources.com where I am trying to gather as much info as possible. I believe that if a google search for “LDN” turns up pages of sites, the word will spread faster and faster.

    Francie

    Comment by Francie | December 2, 2009 | Reply

  5. Thanks so much for that blog.Truly thank you! Would like more.

    Comment by Danielle Caulfield | March 12, 2012 | Reply

  6. I love the way you so eloquently describe your symptoms. I’ve just started 4.5mg of LDN and I’m on my 3rd day. I’ve a bit of a headache but remain positive. Cognitive issues and fatigue are my greatest ‘pain in the butt’ although I continue my work as a professional. I hate forgetting why I walked into a room and get frustrated as to why I start something then get side tracked. That being said, however, I take it in with a huge dose of humour and feel incredibly lucky that I’m still able to o everything I can inc work, be a Mum, and undertake volunteer work. Great blog!

    Comment by Charlie | January 19, 2013 | Reply


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