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April 17th, 2012
05:43 AM ET

The beat goes on for music producer diagnosed with multiple sclerosis

Editor's noteIn the Human Factor, we profile survivors who have overcome the odds. Confronting a life obstacle – injury, illness or other hardship – they tapped their inner strength and found resilience they didn't know they possessed. This week Chief Medical Correspondent Dr. Sanjay Gupta introduces us to Noah “40” Shebib, a music producer who was diagnosed with multiple sclerosis in his early 20s.

Q: What was it like to receive that diagnosis as such a young man?

A: It started with sensory issues. I woke up one day and all the temperature in my body was distorted. My sense of hot and cold and what that meant to my brain was very confusing.  Any time something like that happens to your body - which is very difficult to explain when you have MS - is that your brain is tricked, so your nerves are telling you something that's not true.  Any time your brain is telling you something that's not true, there's a little bit of trauma for your body in general to understand what's going on, so you're a little bit in shock.

I went to the hospital very quickly after that and was diagnosed within a couple of weeks. It continued to escalate to a much worse place in a month, and I spent the next two years of my life getting back on my feet.

Gallery: See exclusive photos of 40 and Drake

Q: What exactly were your sensory problems like?

A: It's a funny story. My leg was just on fire when I woke up one day. I was at the studio. I had fallen asleep and had woken up at 2 o’clock in the afternoon the next day, and my first initial thought was, “Oh, I must've fallen asleep by the heater or something.  My leg is really hot.” Then I got in my car and the floor heater was only on, on the left side. I thought, “That's interesting.”

You know, you have all these other explanations except that your brain is telling you something that's not true.  Then I get home and I sit down at my computer, and I'm thinking the heater is just blasting hot air down there. “Where is that heat coming from?”  Then I put on my boots and I said, “Oh my god, this boot is really hot.  This boot must've been beside the heater.”

You always have an explanation, and of course it led me to understand that something was definitely wrong, which led me to the hospital, and as I said – by the end of that month – I was off my feet and not walking.

Q: What was it like to be off your feet, unable to control your own body?

A: I would say it was inspiring, as bizarre and twisted as that may sound.  I tried to see the best light of it and how I could use it to my advantage.

In an almost shallow twisted way, I said, “I’ve got this disease I'm going to live with it.  I'm going to win with it and my story is going to be that much better when I get there.”  I made that decision very early on in my diagnosis.

I remember lying in my hospital bed and they have the little table they swing across your bed to put your meal on, and I quickly put my meal on the chair beside me, put my laptop and the little keyboard, and went directly to work in the hospital bed.  Luckily enough for me, I don't think anything will ever be able to stop me from making music.

Q: What’s the hardest part of dealing with your disease?

A: I think one of the biggest struggles people with MS face is trying to define it to people and explain how it manifests itself.  It's very difficult, you know.  This morning I had to lie down on my bed to get my socks on because I couldn't bend over. You know, that's not something I tell anybody.  Then the things that I deal with on a daily basis are usually pretty miniscule, so I keep them to myself, but they add up, and it's hard for people to understand that.

So I'll say to someone, “Oh, I can't do that today.  They’ll say, “Yeah, but you were playing basketball with us yesterday.”  They don't understand why or how, and it doesn't make sense to a lot of people.  It's very difficult to grasp the concept.

People are confused, so they result to the obvious answer. "Oh well, that's probably because this happened.  Oh, that happens to everybody. Everybody's tired today.  Oh, we've all had a long week."  That's the most frustrating thing for me in the world, because you're taking for granted how hard I work to be on this level with you.

I try to stay quiet about that stuff.  I don't need to have a parade about how hard I'm working.  It's just exhausting explaining to people what you have to deal with if you're trying to keep it quiet and just trying to live a normal life.

Q: People ask why don’t you just try harder, get a little more sleep, or have another cup of coffee?

A: It's funny, you know, one of the things I deal with is sports.  I played hockey my whole life.  When I was diagnosed, I was probably on the ice 5 or 6 times a week at that time.  I haven't really stepped on since.  Every few years, I stop myself and say, "What are you doing?  Why don't you go play some sports?  Stop being such a baby!  Get out there!"

The first time I did that, I was on the ski kill and got stuck halfway down because my legs went numb on me.  I was on the snow for about 40 minutes before my friends came and rescued me and dragged me down the hill.  Then another couple years go by and I think to myself,  "What are you doing? Come on!  Go play some hockey!"  I jump on the ice and skate with some friends and then don't walk for a week after that.

I'm constantly forgetting even myself what the repercussions of my disease are.  I'll be like, "Come on! Get up! You can do this!"  So not only is it difficult for someone else to understand, it's also difficult for me to understand.


soundoff (120 Responses)
  1. Bob

    LDN will help most of you here posting low dose naltrexone go on-line and read it for yourself

    April 20, 2012 at 10:16 | Report abuse | Reply
    • Gary Cehelsky

      Hmmmm... I will assume that you are a neurologist. "Most of us" know what we need to do. Perhaps I will one day have all knowledge about "most of us".

      July 19, 2013 at 16:48 | Report abuse |
  2. Ashley

    Finally-Someone in a position to be listned to expresses the difficulties with MS. I was diagnosed with MS when I was 25 and three years later now being 28, I wish people would understand your comment of "Do you know what it takes out of my body to be on your level?" Your frustration is shared when other think "You were just walking the dogs yesterday" and today I cannot. I guess you can say even though I am trying to make the best out of MS, I still have my sour moments!

    April 20, 2012 at 13:32 | Report abuse | Reply
  3. Therese

    Those who have already spoke about CCSVI are right! I also had treatment VERY early after my diagnosis( 7 months after ) and I have not progressed one little bit. It is worth it to look into getting tested and treated for blocked veins – especially if you are early in your diagnosis, but it has also helped those who have had MS for years. IT MAKES SENSE!! Its not a cure- no one is saying that it is...but it CAN improve the quality of your life and possibly stop / slow progression.
    Please go to http://www.ccsvi.org to learn more – it could change your life!
    Hugs to all MS sufferers and their families....we are the strongest people I know!

    April 20, 2012 at 23:30 | Report abuse | Reply
  4. Gary Cehelsky

    In early 2000, I started running trail races up to marathon distance. I was a running junky. My professional work and ability was necessary to me only because it allowed me to fund the other thing I loved. And that was to run the trails.

    In the mid-2000’s, I was working for a company that made medical devices. They had hired me 4 1/2 years prior to help address regulatory issues. The FDA blocked selling the product anywhere in the US until they addressed the issues spelled out in a legal consent decree. A product and Quality System remediation was required. The effort would be judged by s successful FDA audit would allow the business to again sell product here.

    There was lots of pressure. There were ever increasing long days and allot less time in the wide open places I loved to run. Scrutiny of the work product by all employees was intense to begin with, but for me, even more so as I started making cognitive errors and missing details in key reports. My colleagues and managers were amazed at my carelessness. I was shamed by their insinuations and redoubled my efforts to redeem myself. I was determined to make no more mistakes. But the harder I worked the worse it became. Then there were those heaadaches right behind my right eye.

    In the early morning of late February 2011, I came in early to compose a report. I casually gazed up at the quad-ruled message I had posted to help me remember something of importance. It was blurry, I closed my left eye. I had zero visual acuity. I was blind in my right eye. In the ensuing hours and days, I went to the emergency room, the eye doctor, the neurologist, and the MRI lab. The diagnosis devastated me. The neurologist looked at the lesions on my brain scan. He turned to me and said. “You have Multiple Sclerosis.”

    I remember my manager, the hatchet man, calling me into the Human Resources office where the HR specialist and he explained to me that my employment would be terminated. I requested consideration as there was obviously issues with my deliverable work product that could be tracked back to the MS. “No”, said the hatchet man, “You are not doing that well. We are terminating you for cause. We will give you enough money to cover your COBRA insurance payments for a year as long as you sign an agreement that you will never attempt to whistle blow or besmirch the company name. Pick up your stuff at your desk and leave the premises.”

    I was 58 years old. I was in a bad job market. I was ill. It took me a week to sign the letter saying I would not call the company by the several names I could string together in one long epithet. A labor litigator I consulted suggested I consider that is was a decision of whether to get health benefits that I need now, or potentially waiting for years to legally get even.

    I am still having issues with fatigue. I don’t get out on the trail for any long runs any more. I have insurance again. I am 59 years old now, taking my medicine and going to MS support group meetings. I keep my mouth shut so as I can work with my new firm with no risk of discovery that I have a potentially debilitating disease.

    I think I am doing OK.

    April 22, 2012 at 10:51 | Report abuse | Reply
  5. Betty

    I hope all of you will check You Tube for the TED video by Dr. Terry Wahls about her MS... amazing!

    April 23, 2012 at 06:34 | Report abuse | Reply
  6. ccsvi2891

    There is a new treatment out for MS patients called CCSVI treatment. Most patients who are diagnosed with MS have CCSVI. It is where there is obstructed blood flow in the veins that drain the brain and spinal cord. 2 major veins that radiologists look at are the jugular veins and the azygous vein. Balloon angioplasty is used to increase blood flow which in turn helps elevate MS symptoms. This treatment has helped many MS patients and only some clinics in the US are offering this treatment through an IRB approved study through the NIH and Hubbard Foundation. For a complete list, you can visit clinicaltrials.gov or hubbardfoundation.org
    Hope this helps for patients seeking treatment and a way to get back their life again!!

    April 26, 2012 at 12:28 | Report abuse | Reply
  7. Marc Romano

    Great piece, but the end with him walking down the street. Show someone like my partner who was like he was in his 20's and 30's, but now at the age of 50 he can barely stand....stop showing people with MS who are in a remission state....start showing those who are starting to progress....

    April 28, 2012 at 18:28 | Report abuse | Reply
    • kathy

      I too have MS. I don't know what to make of it because everyone is making it seem its no big deal in this day and age to have MS.I wish there was more talk about should I say, the down side of MS. Thank You for putting it out there, lets talk about what MS does to you.

      August 13, 2012 at 15:19 | Report abuse |
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  15. Pearl Horth

    Multiple sclerosis (MS) is a disease in which the nerves of the central nervous system (brain and spinal cord) to degenerate. Myelin, which provides a covering or insulation for nerves, improves the conduction of impulses along the nerves and also is important for maintaining the health of the nerves. In multiple sclerosis, inflammation causes the myelin to disappear. Consequently, the electrical impulses that travel along the nerves decelerate, that is, become slower. In addition, the nerves themselves are damaged. As more and more nerves are affected, a person experiences a progressive interference with functions that are controlled by the nervous system ^

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    March 22, 2013 at 15:23 | Report abuse | Reply
    • Gary Cehelsky

      You sound like my overpaid neurologist who never gives me the courtesy to listen to a single word I have to say. By the way – There is Relapsing/Remitting, Progressive Relapsing/Remittiing, and Progressive, and even maybe a couple of more diagnosese. It doesn't matter – just understand I and others like me wil have it for life – no matter how many major arteries close to the brain they try to roto-root, no matter how many diet modifications we try try, no matter how many drugs we take. Thsi is as good as it gets.

      July 19, 2013 at 16:36 | Report abuse |
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    May 22, 2013 at 05:17 | Report abuse | Reply
    • Gary Cehelsky

      Huh??? I must have missed English class that day. What were you trying to say? I cannot understand. Of course, it might be the MS.

      July 19, 2013 at 16:42 | Report abuse |
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Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.