I don't think I am violating any Hippa (Hipa? Hippo?) laws, but we had a visit with the MS specialist at Rush this week.
I enjoy the leisurely paced drive into the heart of Illinois. Drivers are most courteous along the route and always drive the speed limit, by the way. And the 45 minutes it took us to get from Rush to Mannheim was time well spent in communing with nature.
Her appointment was at 2:30 and she went in at.....2:30.
Dr. B., and a doctor to be with one year left in her program, (Dr. young and pretty) sat and chatted with Jackie, asking questions, doing reflex tests, balance checks, and listening.
We talked about a new drug she has been on for a year, Amprya, a drug developed in part by her first MS specialist at Rush. Some people have been experimenting with the drug, taking two doses in the morning and one at night which seem to have a noticeable improvement over the generally prescribed one in the morning, one at night.
He told us that the disease usually, and usually is the operative word here, "burns itself out" somewhere in the mid 60s. What debilitation you have suffered at that point most likely will not be recovered, but can be improved.
We talked about her discontinuing her weekly injections. This is a drug that costs a lot of money and thankfully her insurance covers it. I honestly don't see how people can take this drug without an insurance plan. Actually, both drugs are in the $$$ range.
The majority of MS cases are reported in northern latitudes...it is almost unheard of in southern climates. The majority of victims are women.
Some studies have linked a lack of vitamin D in diets to the disease, and there may be a cause and effect relationship but it can't yet be proven. His advice: tell our daughters to take vitamin D daily....minimum 2,000 units. He recommended Jackie up her dose to 5,000 units. He also said this is a long term situation. Taking Vitamin D for a week or two isn't the key...but taking it for life is.
Jackie was also one of the lucky winners of the Who Gets Food Poisoning Contest at the recent retired teachers event....in which a rumored 75 of the 100 plus attendees came down with nausea, diarrhea and the ever lovely projectile vomiting. (Whereas I did not suffer any aftereffects. Sheri K. thinks it's because my world traveling and eat anything philosophy has created a tougher stomach.)
Dr. B reminded us that MS slows down the body's reaction to fighting illness. He said while others took a few days to recover from the luncheon, her body may need 2 weeks. And indeed, it has taken longer than we hoped but she has been fine for two days .... (that is the sound of me knocking on wood.)
If you live in Rochelle, chances are you know someone besides Jackie with MS. We seem to hear of new cases every week....friends of friends, sisters of friends, total strangers who now share a link that really nobody should have to share.
When she was diagnosed 15 years ago, we were told researchers were very close to finding a cure. Well, they still are looking.
In some ways we are lucky. Yes, she shuffles her left leg... but she is walking. Yes, she tires easy...but she is walking. Yes she wobbles like a Weeblo .... but she is walking.
And so am I. I am walking May 5 in St. Charles in an MS fundraiser. My goal is $500 and donations can be made by visiting the MS Chicago website, finding the fundraiser button, looking for the St. Charles walk and then entering my name and your donation.
This disease can be cured, it will be cured. Hopefully in our lifetime.
So take your vitamin D and take a moment to support me and the thousands of MS patients in Illinois with a donation.
We will all thank you for helping win the battle against MS.
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