Advice to the newly diagnosed

I was surprised a few weeks ago to get an e-mail from a family friend. It turns out that for the past year or so she has been exhibiting various symptoms that her neurologist was thinking indicated MS. She asked for my advice and suggestions. This is what I shared with her. I also made it clear that many of these items were things that I wish I had done. You know the old adage, " do what I say, not what I do."

·         Deny the MS diagnosis until you have three test results that all confirm MS, for example an MRI of the brain or spine showing plaques, a spinal tap showing the appropriate abnormality and either another test like evoked potentials or a combination of symptoms. Sometimes the medical profession may find it easier to put a disease label on us before completing testing. There are many other things the symptoms could be.

·         Build a health care team who acts on your behalf in spite of medical costs or insurance challenges. If you don't feel that your doctor is acting in your best interest, find another. You can contact your local MS Society branch to get lists of supportive primary care physicians and neurologists.

·         Contact the MS Society in your area for support groups for the newly diagnosed and MS related exercise groups. I especially found the MS Society sponsored Aquasize groups very helpful. Make “Use it or lose it" your personal mantra. It is very important to continue exercising as long as you can and to develop a stretching routine. Consult with a physical therapist or even consult books in the library or appropriate webpages.

·         Fight any insurance claim denials. There will be a lot of them because the insurance companies do not feel it is medically necessary to support patients with chronic medical conditions. There are at least two ways I have found to get around the insurance company's policies. First, simply request the form they require to protest the denial. Fill it out; attach a letter explaining further circumstances and a letter from your doctor explaining why the item is medically necessary. Send it in by snail mail, return receipt requested. I found that if it is not sent in this matter, the company will claim non-receipt. The other one is a little sneakier; ask your doctor to change the insurance code on the request to something other than MS. For example, if your doctor requested an electric wheelchair for you, and the insurance company declined it, the reason could be because it is not medically necessary for someone with a chronic condition to have this. However, if the doctor resubmits the request with the insurance code for a balance disorder, it may go through. It did for me!

·         Assume nothing about the future progression of the disease. Everyone is different. I've met several people who have very mild symptoms; they might shuffle when they walk or have slurred speech. These folks are still working if they want. Then there are people like me who were asymptomatic for many years and then suddenly had an exacerbation causing disability. Then there are people I've heard of like Annette Funicello, who went from walking to being fed puréed foods in a hospital bed within a month. And then there are people who fall outside of these examples.

·         Be proactive. Even if medications take away most of your symptoms, things will probably still be gradually getting harder. Act before it's a problem. Move to a one-story house, or a first floor apartment. If you job is stressful or requires a lot of physical activity, find another one that you still enjoy but that is less taxing. Start eating more healthy foods. Cut out the high-fat, and throw in the green leafies. Although it's not a problem now, you'll be thankful later.