I HAVE ALWAYS DISLIKED ROLLERCOASTERS but that's how my life appears many times. I'm Sheila and I was diagnosed with Multiple Sclerosis back in 1976. MS doesn't scare me as much anymore but it certainly didn't start out this way. A good 20 years of dealing with it certainly get's boring. To be honest, I find my next birthday scares me more. MS and I have been together too long now and I've learned to make some sort of peace with it. There are too many other important things to contend with in my life to be impressed with MS and its antics anymore however it can still gets my attention when it keeps me from doing the fun stuff. Life's too short and seems worse when something's yanking on your shirtail.
Signs and Symptoms
Here some signs and symptoms I experience.
1. Muscle weakness, paralysis and spasticity
2. "Intention" tremors
3. Poor balance
4. Numbness and/or pain (ranging from deep sharp pain to tingling/prickling sensation.)
5. Vertigo (or dizziness)
6. Blindness, double and/or blurred vision
7. Difficulty in speaking,swallowing and breathing
8. Some euphoria or depression (I'm usually a "happy" camper!)
9. Bladder dysfunction (oops!)
10. Fatigue or tiredness
11. Hearing loss
12. Seizure activity
I have been in a wheelchair for many years and I still function as best I can at home alone or with some help. I've had nursing homes and/or assisted living facilities shoved in my face and in my opinion, it isn't necessary for me. MS affects everyone differently and due to its ups and downs, it can be difficult to determine its course.
Patient Bill of Rights
* To be treated with respect.* To have and to express your own
feelings and opinions.
* To be listened to and to be taken
seriously.
* To set your own priorities.
* To say no WITHOUT feeling guilty.
* To ask for what you want.
* To get what you pay for.
* To ask for information.
* To make mistakes.
* To choose NOT to assert yourself.
* To change your mind.
Patient Bill of Responsibilities
* Keep scheduled appointments.* Be honest with doctors and other health-care workers.
* To give information about experiences and condition as clearly
and briefly as possible.
* Respect the doctors and health care workers.
* Understand that no one has all the answers.
* Follow the treatment plan agreed upon.
I've discovered that EVERYONE needs to become a good consumer and active self-advocate insisting on appropriate medical care. Make sure a good rapport is established with your physician. Be active rather than passive about making your desires known but strike a good balance. Remember that KNOWLEDGE IS POWER but get good information from reliable sources. We all have rights and no one cares about your own healthcare more than you do. Start managing things within your power.
Some Medications with Promise!
1. Avonex weekly deep muscle Injections (1-a Interferon)2. Betaseron shots (EASY..just under skin) a couple times a week. (1-b Interferon)
Great Information Sources
MULTIPLE SCLEROSIS (A Guide for Patients and Their Families)Edited by: Labe C. Scheinberg, MD
The National Multiple Sclerosis Society
733 Third Avenue,
New York, NY 10017
(1-800-344-4867)
Email: www.nmss.org
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