Solving Your Multiple Sclerosis Problems

Of course there will be many problems that I can't cover in a short blog post, but I'll tackle a few that I read repeatedly on line.


"I just got my diagnosis of MS. Is that Jerry's Kid?" Seriously, I just read that recently. Now, over twenty years ago, I thought the same thing when I heard "MS." Just goes to show you the power of TV and disease awareness. How about that Montel hosting a marathon? I digress.


The problem here is with doctors who do not know enough about MS. If your doctor, and I hope your doctor who tells you that it is MS is a neurologist, does not offer enough information that you wonder about Jerry Lewis, you need a better doctor. You should leave the office with written documents explaining all about MS. (Especially if you go alone. Your mind may go blank after hearing you don't have a brain tumor--YAY--or hearing you have a disease with no cure.)

"How do I know when what I feel is a relapse or just a passing fancy?" This was very difficult for me. I had waited a few years longer than I should have to see a doctor about my foot drop, eye stars, numb body parts, blah blah; so, I was used to significant strange body malfunctions happening and then just going back to normal. Maybe I sat in the hot bath water too long. That can cause a pseudo-exacerbation. How do I know??



Simple solution: you deal with what might be causing your symptom and see if it goes away. Get out of the bath, splash cold water, take aspirin to lower your body temperature. Many of my symptoms in the beginning years were closely led or followed by the common cold symptoms. If dealing with the underlying condition does not resolve your issue---get thee to your doctor.


Unfortunately, it is not always so simple. Don't take this on by yourself. This is why God made doctors who specialize in MS. Call, email (My Dr., in the early years, emailed long before others began the practice and now I think fewer do so. Our loss., and it seems a growing trend to is let "MS Specialists" usually a nurse, drug company flunky,health care aide, or social worker handle all the worries of MS Newbies) or visit your doctor's office and let them figure it out. Truth be told, only a MRI keeping close tabs on you, could really say for sure. But I say---what does it matter?!


Anytime your body is not operating as it should, you must respond to it. I discovered that waiting a few days, or even a week, doesn't seem to matter. So, time will answer your question. I don't like them calling any acting up of MS "pseudo" because that implies fake or unimportant. WE know it is neither. If it is still an issue after a week, you are having a relapse. I am not a doctor, so YOUR doctor may have his/her own time frame---but the old "take two aspirin and call me in the morning" and "...if you make it through the night," well, notice how the common element is TIME. Some things are just not able to be judged without time. Get used to it. TIME is a huge part of everything MS-related. Patience is a virtue you must cultivate if you have MS.





"Should I tell my boss at my job?" There is a certain 'Don't Ask, Don't Tell' when it comes to illnesses like MS (ones that can lead to disability and the ADA, Americans with Disabilities Act). That decision must be all yours, but I told everyone I knew. Why? Because MS is better handled with friends and family to back you up, lift you up in spirit and sometimes body. My co-workers were fantastic and you can't ask for ADA protection if you don't let your job know that you have a disease like MS. If you ever need to apply for Social Security Disability Insurance (SSDI), there will be a form with a question about how you WERE compared to how you ARE. The sooner your job sees how you WERE in the beginning, the better they can compare how you now can not do your job. Oh, I hear some of you---I thought just like you: I am NOT, I CAN NOT lose my job! Yep, and thanks to the ADA I was able to work full time with MS for over fifteen years. YOU may never have to quit your job. Remember the 50/50 deal---50% of people who have MS will never need a wheelchair and they will lead very normal lives. Hooray! Your boss will think you are terrific, strong and the best thing since hot dog buns. And if you DO become too disabled to work, then you have started your documentation early. Hooray!



"No one will want to date me now!" Are you not watching Glee? Viva La Difference---being not normal is IN right now. Meredith Vieira (host of Today Show, The View, Millionaire, and originally a damn fine journalist) went on the first date with her husband of many years and he said within the first hour, "I have MS." She didn't care. That is the kind of person you want. Life is short. Take the leap. Meet people at MS support groups, the grocery, coffee shops, DOCTOR WAITING ROOMS---put yourself out there. dating has never been for the weak. Just never give up. I see 90-year olds hitting on people all the time, ok, I live in a retirement/assisted living home, but you get my point.

"My life is not what I want!" Uh-hem, SPOILER ALERT---few lives are what we planned. That is what makes them so precious. You should be thanking your lucky stars that you are alive. Life is a gift. Keep reminding yourself of that. Hang posters, cut out inspiration quotes, GET CONNECTED. Face Book is FULL of people with MS and all their many inspirational comments, photos---you name it. What a change from when I was DXed in 1990. Make a list of what you want to do with your life. Put on your Gumby and be flexible. There is NOTHING you can't do, just know that you may need to do it differently than you imagined.

Okay, follow my suggestions and maybe some of your problems can be solved. Look, you only get one life. EVERYBODY will have obstacles and unpleasantness tossed in their path. And you may have noticed that my solutions are true for many of life's bumps, twists, and turns. You are not alone. (Keep reading and searching on line for MS advice, tips, funny stories, blogs, hospitals, research centers, journals, articles, you have much to learn---I know I do!)

To conclude: Find a quality doctor.
Improve your overall health habits.
Be patient.
Don't go it alone.
Never give up on love.
Never give up on you.
Bend, but don't break.
Carry inspiration in your pocket.

In the words of Helen Keller, "Life is either a daring adventure or nothing."