Getting a diagnosis of multiple sclerosis (MS) can be a lengthy process. When
some people finally learn they have the condition after months or years of symptoms,
they tend have a feeling of a relief because they finally know what it is. Now for
others, it can be more of a shocking. Either way, you'll probably have concerns
about what the disease means for your life and your family.|
After a MS diagnosis is made, many find it usually leaves them or their family
with an urgent need for information. They don't know what MS is or what it means.
Many times they have no idea where to begin to find information on a disease that
they may not have heard of before.
As they begin to find and read the information that they have found, they hope
that what is found is at least unbiased and truthful. As more information is found
and read, it should help ease any uncertainty and confirm what if factual. There
are a great many sources that can answer your questions or at least inform you
enough so that you will know what to ask your doctor.
It's very important that when diagnosed with this disease, you find out as much
information that you can about it from many different sources. Take all this
information that you find and talk to your doctor, ask questions and get
answers. There are so many good doctors out there, but you have to make sure
that the neurologist you choose is compatible with you. Just like a spouse, you
need to make sure that you can communicate well with each other, if not,
misunderstandings are likely to occur. Make sure that he or she listens to
everything you say and answers all of your questions to your satisfaction (this
may not be like all spouses).
All of the pharmaceutical companies that make the current medications are a
great source of information. They will provide statistics and trial information
on how well their drug works. They will also compare their medication to the
other available medications, but pause and remember that they are in the
business of making money and are biased about using their treatment. All of the
information regarding the drug comparisons needs to be viewed as if it were a
commercial on television. A pretty package can never be the determining factor
in any decision, but rather the facts and results. It's important to keep an
open mind as to a course of treatment and which is best suited for you.
One thing you must remember is that if you aren't happy with your current
neurologist, switch. Most doctors would agree that the patient must feel
comfortable with them, and that the course of treatment must be made by both
neurologist and patient. Don't worry about hurting the doctor's feelings; in
this case it's all about you and your health. Some neurologists may have a
preference for some medications and not for others, ask why. Remember that once
an agreement is made on a specific course of treatment, start it and stay on it.
This is a commitment that's very important to keep.
When all of the tests are completed a diagnosis usually can be determined. The
greater number of positive test results will provide the doctors with a better
sense of certainty of a diagnosis. The neurologist making the diagnosis will
usually classify the disease in one of three ways: Definite, Probable, or
"Definite MS" means that the symptoms and test results all point toward MS as the
cause. "Probable MS" and "possible MS" reflect less certainty and may require more
time for observing the progression of the disease and the distribution of symptoms.
A diagnosis of "possible MS" could also end up as "not MS" if further tests
determine, without a doubt, that it's not.
This is a time where a simple and definative test would be welcomed by many.
Something as simple as a blood or urine test that would give a positive or negative
could save time and anguish for many. But, as it stands for now, this isn't possible
with MS at this time.
Most people find that it's important to find out either yes it's MS or no
it's not. If the diagnosis is yes then they can begin to deal with that issue
and if the answer is no then they have to try to find out what else it could be.
When the answer is somewhere in the middle, then they are usually left in a state
of limbo just wanting answers.
When being diagnosed with MS, a patient's doctor must look at the "now" as
well as every possible step in the future. A good and clear plan must be established
that looks at every aspect of a patient's needs.|
A great example of this is Dr. William Stuart, founder and Medical Director of
The Multiple Sclerosis Center of
Atlanta, and his guiding rules in regard to patient care. Many doctors probably
use this or a similar set of rules, however, it's important that the patient is made
aware of what is expected of their doctor and of themselves.
Dr. Stuart's 10 Rules of MS Care are as follows:
Paramount in MS care is making or confirming an accurate diagnosis.
All subsequent care is dependant on Rule One.
2. Education and Early Treatment
For patients to accept and follow early and long-term treatment, it
is essential that they first be knowledgeable about their disease.
3. Symptom Management
Quality of life with MS is not only affected by control of disease
progression, but also symptom management.
4. Disease Course Monitoring
All MS progression is not clinically apparent. Vigilant clinical and
MRI monitoring are equally important in outcome and treatment
5. Management of Disease Progression
Single drug therapies are often effective. Increasingly, they need
to be supplemented with a multiple drug regimen to ensure more
control of disease progression.
6. Physical and Emotional Conditioning
MS is presumed to be an autoimmune inflammatory disease of the
central nervous system. It does not occur independent from a
patient's general physical and emotional health.
7. Living with MS
"Accept, take control, and move on!"
8. Rehabilitation Management
Use rehabilitation to regain what may have been lost. Also to
maintain and strengthen what is still being used.
9. Assistive Devices
When MS creates physical obstacles, rehabilitation is "taking
control" and assistive devices are "moving on."
10. Life Planning
While the future will bring a cure, current expectations of
productivity must sometimes be modified. Careful monitoring of
resources and position can be achieved through planning.