This is an email I had sent to a very frightened young women (23) I had met at my neurologists office. MS is affecting her optic nerve.
Dear Michele,
I am sending you this email in response our conversation this morning. It is my understanding that you have recently been diagnosed with Multiple Sclerosis
I hope this note may be of some help.
I have suffered with MS since being diagnosed in 1986-and consider myself fortunate, loss of sensory abilities, muscle spasms, weakness and loss of balance have all effected me but it is only within the last 7 years that I can’t drive and only within the last 4 years that I have had limited individual mobility, I am now in a wheelchair.
MS is an insidious autoimmune disease with no cure it effects each individual differently and the progression is different for everyone that is effected. The disease attacks the coating of the body’s nerve endings and leaves a scar (sclerosis) which stops the body from its normal nerve functions. That is a very scary diagnosis but there is hope.
The only remedy for guys like me years ago was to load me up with steroids, now there are a host of disease modifying treatments available still no cure but a real measurable delaying of the progression.
In the past thirty years I have learned what helps with MS.
1. JOIN the National MS Society, MS Foundation and the MS Association of America they are a wealth of information, you are not alone, these organizations report the latest research and successes, club activities and may help with such things as cooling vests so you don’t overheat to body lifts to help you to get up from the floor when you fall because you have limited balance and muscle abilities. The MS Society and MS World Inc. have great monthly publications and the Indiana chapter of the MS Society is also very helpful with programs and information. The Indiana chapter of the MS Society supplied me with stretching guides that I use to help with my spasticty.
2. DO NOT put your faith in any neurologist in Northern Indiana I have gone thru a few over the years ranging from totally incompetent to really nice guys who may or may not help but to get ahead with this disease make an appointment at the Mellon Center at Cleveland Clinic in Ohio or Rush University Hospital Neurology Department or University of Chicago Neurology Department in Illinois. Check medical coverage to see who is in network.
3. MUST CHANGE DIET this is tough but can not articulate how important this is, we are what we eat and it affects everything with MS. I can recommend three cookbooks; Runners World Cookbook, Mediterranean Diet Cookbook there a bunch to choose from and The American Heart Association Cookbook when you seriously change your diet good things start to happen but it is very difficult to get into the routine but I believe it does help slow the progression of MS dramatically.
4. GET AS MUCH SUN AS POSSIBLE, expose as much skin as you are comfortable with weather permitting, all is best but some is good. The more exposure the more vitamin D your skin naturally produces, up until the last few years MS was known as the white mans disease the highest concentration of people with MS per 100,000 is Scotland and Finland the lowest being counties like Indonesia and Brazil therefore a lack of vitamin D may contribute to the disease. Exposure to the sun in moderation is good, I also take a vitamin D tablet daily, no definitive clinical proof but I think it may help can’t hurt.
5. AVOID EXTREMES IN TEMPATURE, too cold causes problems and too much heat and humidity really causes problems just try to stay in 70 and safe and outside when possible but again be careful not to overheat or get chilled.
6. AVOID STRESS IF POSSIBLE, like diet and lack of vitamin D no definitive clinical proof, that I known of but I believe we experience a lot of stress in daily living which I believe is a contributor. Try not to worry and be happy.
7. THERE IS SOME HELP WITH MEDICATIONS, the vast majority of disease modifying MS drugs are tier 5 specialty drugs which are very expensive, organizations such as Patient Access Network (PAN) Foundation and other foundations try to offset costs. These organizations rely on donations to help fund their programs they can help or not help according to their current funding if nothing else it is worth applying for assistance.
I hope this note is helpful I imagine many of my recommendations can easily be refuted but this is what has worked for me. Just remember that you have to get up every day and continue to swing the bat do not go gently into night, fight against your fate and fight against this injustice to your life, we certainly did not ask for Multiple Sclerosis but we do have to live with it.
Sincerely,
Favorite Quote:
“In the midst of winter, I finally learned that there was in me an invincible summer.” Albert Camus
MS ID card follow up with on how to get one
Closed versus open MRI
