Things to do when newly diagnosed

MS is not, in and of itself, a terminal disease. As far as I know it does not kill, although it may cause you to lose your ability to walk, to talk, to feed yourself, even to breathe. But it is not a degeneration of your muscles. It is a degeneration of your nerves.
 
This is what we believe as of today: it’s a neurological disease. I also think we agree that it most often originally manifests in the brain and spinal cord, and sooner or later affects the signals sent to other parts of your body.  
 
There has still not been an actual cause identified, nor is there a cure. Know that you did nothing “wrong” to cause it, and you certainly did not ask for it. And while there are medications on the market today that attempt to slow-down the progression of the disease, they work on everybody differently. It may take some trial-and-error to find the one that is right for you.
 
These are some first things I’d recommend you do when newly diagnosed:
 
  1. Forge a relationship with a doctor. Find a neurologist, ideally an MS specialist, but more importantly someone you can work with over time, someone who listens to you, someone you can reach when you have a question. This may be the doctor who diagnosed you, but maybe not. Remember that no one cares as much about you than you do. Make sure you are working with someone who honors that.

    Consider that you are now creating your own healthcare ‚ÄĚteam”: general practitioner, neurologist, physical therapist, ophthalmologist, psychologist, naturopath, dentist, gynecologist, etc.  Maybe print out a DATED list of all members on your “team” and give it to each one to be kept in your file, along with a list of all medications, even vitamins and supplements, that you are currently taking. Keep regular appointments with each and give them updated lists at every visit.

  2. Start prescriptions ASAP. Get on medication as soon as possible. As drastic as it might seem in the beginning, when your first symptom may have already gone away, most of the time M.S. continues to do damage behind the scenes. And when you do begin to show symptoms, it may be to late to reverse any damage.  At this time there is no known way to do that. 

  3. Do something from your bucket list. Do something you’ve been wanting to do, however small, right now, today. For example, I’d wanted to learn to ride a motorcycle for years before I got diagnosed, so I used it as an excuse to start, enrolled in a motorcycle safety course, then bought a used bike, got licensed for it, commuted on it for a number of years, and finally quit to do something else on my list. I could never ride now, so I’m glad I did it when I was still able to. Consider starting your own “bucket list”, things you’d like to have experienced or done before you can no longer do them, or before you die, i.e.”kick the bucket”.

  4. Introduce yourself at a support group.  Contact a local chapter of the National Multiple Sclerosis Society (NMSS) to find one. Take advantage of their free resources while you are there. Also check into other related groups (see list below). In the beginning of this journey, you may find a support group but think you have nothing to offer and besides, everyone there seems so much worse off then you and who wants to be reminded of how bad things could get? But resist that thought.

    Whether you go regularly or just whenever, consider this part of building your team.  It is always helpful to know others on this path, and while your acquaintances may start to refer to you others in their lives who have just been diagnosed or touched in some other way by this disease, do not allow this to be your only contact with other MSers; going to a support group is a sure-fire way to be around groups of others who know what it is like to be living with this.

  5. Examine your spirituality. Decide what you do or do not believe. Enough said.
Finally, if you are so inclined, find a diet or other eating plan that you can stick with.  I started off in a flurry, determined to make any dietary changes that made sense to me. After a year when I wasn’t seeing any evidence it was helping (how, exactly?), but I also didn’t have another “flare up” (and it never occurred to me to connect the two!), I quit the diet, joking that “A life without cheese is no life at all.”
 
Would it have made any difference to my situation now? Who knows. There has not been any scientific research to prove definitively that diet makes a difference. But if I could do it over again, I’d stay on the side of “restricted”, liberally allowing myself to “cheat” rather than giving it up entirely.  If you are interested in diet and MS, the “Swank” diet seems to be the authority: originally published in 1972, it’s been revised and updated incorporating new research ever since. (The Multiple Sclerosis Diet Book Swank, Roy.)
 
Be gentle with yourself.  Know that this will not be a sprint but a marathon.  
 
Related stuff
  • MSAA MS Association of America, a U.S. nonprofit organization founded in 1970.
  • NMSS National MS Society, a U.S. nonprofit founded in 1946.
  • NARCOMS North American Research Committee on MS, global registry for MS research, established in 1993.
  • PatientsLikeMe.com A health information sharing website for patients, launched in 2011
  • MSFriends NMSS program for peer-to-peer phone support
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One thought on “Things to do when newly diagnosed

  1. Good advice. It works for any chronic or terminal disease. I need to work on a bucket list! Thanks for posting.

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