MS Maze

The necessity of advocating for ourselves when it comes to health care is detailed in a report by CNN Medical Correspondent Elizabeth Cohen. It is a piece of advice I shall take to heart.

“I learned that I must always remain in control, double-check everyone’s work, and trust no one completely. I must have been sheer hell to be around. But I know that my cantankerousness saved my life on several occasions.” - Actor and Author Evan Handler

Happy Birthday, Mom (Jake)

Your Health is on the Line (Mandy)

Thank You, Professor Pausch (Mandy)

One of the worst times in the life of a multiple sclerosis patient is the pre-diagnosis phase. Symptoms come and go before you manage to see a doctor. You get the feeling that you are not being taken seriously by physicians. You’ve researched online and self-diagnosed. All you want at this point is the real diagnosis and the assurance that you are not crazy. On the other hand, you really don’t want to her those words, “You have MS.” Continue…

It was like a flashback to years gone by.

This afternoon, I had my first visit with a new doctor. Expecting to have to fill out tedious forms upon my arrival, I was stunned to be handed a one-page questionnaire which asked only the most basic information –  name, age, address, phone number. The receptionist took the completed form from me, photocopied my insurance card, and pleasantly asked me to sit.

A few minutes later, a nurse came to show me to the examining room. She then proceeded to slowly ask about my health history and confirm the reason for my appointment. She took her time, asked follow-up questions, and even cracked a joke or two with me. Here it was, 5:00 pm, and she seemed in no particular hurry to rush me through the process.

Next came the doctor. An older gentleman with a nice smile and easy personality. Again, no attempt to rush. He looked at the nurse’s notes, asked a few more questions, and began his examination. Taking his time and explaining his thought process every step of the way, he had me quite at ease.

Then, wonder of wonders. He exited the room and said that we would finish talking in his office. There he did some more explaining about what he expected from test results. He also gave detailed explanations of two different prescription medications, leaving the final choice to me. Well past 5:00 now, he made sure that I had no further questions before wishing me a wonderful evening.

I was so taken aback and so impressed that I had to tell the receptionist on the way out. It used to be like that all the time, I remembered. In recent years, I had become accustomed to doctors who are too busy to spend three minutes on me, and who rush me out the door so fast that I am left stunned and full of questions.

This was my first doctor’s appointment in years that did not leave me totally stressed out. Thanks, doc. You are a credit to your profession, and you did more for me today that you realize. You are a healer!

So, are you crazy? Imagining things? Faking? Just looking for attention? You know what a multiple sclerosis exacerbation is, but what does it mean when your doctor tells you that you are having a ‘pseudo’ exacerbation?

Merriam-Webster’s Online Dictionary defines the word ‘pseudo’ as:

Being apparently, rather than actually, as stated: sham, spurious

Don’t let the word get you down. Your doctor is not accusing you of being a sham. In this case, pseudo has a very different meaning.

Continue…

Detective Ferguson climbs tentatively to the top of the step-ladder. Nervous and perspiring, he is completely overwhelmed when he reaches the third step. His fear of heights manifests itself in the form of dizziness and he collapses in a near-faint. Alfred Hitchcock’s 1958 classic thriller, “Vertigo,” starring James Stewart, uses unique camera angles and imagery to capture the fear of heights as never before. There is one small problem with that. Vertigo is NOT fear of heights. Until recently, I, along with many other people, drew my knowledge of the subject from that movie. Just further proof that life does not imitate art.

Read Full Story…

Two things happened upon hearing her neurologist at Johns Hopkins utter the words “This is MS” while examining the MRI films of her brain. First, there was a feeling of exoneration. We weren’t crazy. All the inexplicable on-and-off-again symptoms that were plaguing Mandy had their roots in an actual, true-to-life disease. Then the other shoe dropped and we froze. Though we were afraid to say it aloud, we each thought the same thing – ‘what now?’

Read Full Story…

You’ve been diagnosed with multiple sclerosis. What happens to your health insurance coverage? The good news first:

HIPPA: If you or your spouse are eligible for group insurance from an employer, HIPPA laws protect you from exclusion from the group health plan due to your health status, nor can you be charged more in premiums.

COBRA: If you lose coverage due to separation, divorce, death or children leaving the plan due to age, you may elect coverage under COBRA for up to 36 months, or for up to 18 months due to loss of job.

What about when your COBRA period ends? What happens if you become partially disabled? What if you can only work part-time? What if your spouse is not eligible for group coverage? Now for the bad news:

Laws vary from state to state. In some states, the law does not require that insurers offer you coverage at all. In other states, coverage must be offered, but there is no limit on premiums they may charge. A few states have a high risk pool of some sort, others do not.

If your disability reduced you to part time work, could you afford $1,000 or more per month in health insurance premiums? How about if that $1,000 did not cover your prescribed MS medications, which have no generic and cost approximately $15,000 annually? Without health insurance, would your doctor still see you?

Fact: 47 million Americans, or 16 percent of the population, were without health insurance in 2005, the latest government data available. The number of uninsured rose 1.3 million between 2004 and 2005 and has increased by almost 7 million people since 2000.

Many are middle class people who have worked hard all their lives, paid their taxes, paid their health insurance premiums through the years, and have had a change of circumstance beyond their control. Help is not readily available for this group. Why, in America, do we allow such people to fall through the cracks? Why must millions of Americans, of all ages, be forced to choose between taking their prescribed medications and putting dinner on the table? It’s an unconscionable disgrace.

What are we, as concerned citizens, going to do about it?

MS Maze encourages you to weigh in with your thoughts on this important issue. All comments are welcome. If you are interested in doing a guest post regarding the State of Health Care in America, please email: mandycane@comcast.net

I’ve created a new category of posts which I’m calling the “State of Health Care”. Recent events in my own medical situation, in addition to news items, keep focusing my attention there. This will be a series on the topic of the health care professionals themselves and the health care industry. Unfortunately, the two are now intertwined so completely that they are barely recognizable separately. Let’s face it, the state of health care in our beloved country is in disarray and people are getting hurt.

I believe the powers that be when they proclaim that we have the best health care in the world. What is painfully obvious, though, is that it is not so readily available to all of us. The president, congress and the wealthiest of us have access to this best health care in the world. The rich and powerful from other countries often come here to take advantage of this excellent health care. Why, then, are middle-class Americans, in increasing numbers, taking “medical vacations” to countries such as Mexico and India? Why, then, are people forced into bankruptcy and poverty because of a medical condition or hospital stay?

Fewer and fewer employers offer group coverage for their employees, due to skyrocketing costs. People like me, with a medical condition such as MS, have much more limited access to health insurance and health care options. Being partially disabled and willing to work-part time in order to continue contributing to society works against us. Part-timers generally don’t have access to group medical plans. Ever tried to get individual insurance with a pre-existing condition such as MS? People with MS generally have a near-normal life span, but face enormous financial burdens as a result of their disabilities. The few MS medications currently available have no generics and cost an average of $15,000 - $20,000 per year.

• Try to find a new doctor and the first question you are asked is, “What insurance do you have?” Getting through the front office staff in many doctor’s offices today is a stressful experience. Enter through the voice mail menus. The doctor won’t take your call. The nurse has yet another voice mail menu. The receptionist tells you the appointment book is filled. The billing department won’t explain the bill but will gladly turn it over to a collection agency.
• You’ve taken a day off to take some expensive medical tests. You’ve received several bills in conjunction with these tests. You can’t manage to find out the results of the test.
• You’re at the hospital to take a test, and you’re forgotten alone in the room.
• You receive a message from a nurse telling you that your tests indicate a problem. You are told to see a specialist they recommend and that you should not call them — they will call you. The call never comes. No medications or remedies are offered. Your only option is begin again with voice mail hell.
• Prescription for Stress: Make an appointment with a doctor. Wait three months. Get rushed through in five minutes.

These are just a few tidbits from my personal experiences of the last few years. I will give more detail on these individual events in future posts. I believe there are many caring doctors and nurses who want to actually help their patients. I also believe that our entire system has evolved into an unmanageable mess which works against the patient and doctor alike.

I was diagnosed with multiple sclerosis in January of 2004. I immediately accepted it as just the luck of the draw something I have to deal with as best I can for the rest of my life. Since diagnosis, the single biggest source of stress has been the health care industry itself.

I hope you’ll follow along with my upcoming posts and share your own health care stories with MS Maze. Up next: Wayward MRI Results

I received my official diagnosis of multiple sclerosis via email. No, I’m not kidding.

I had spent months going round and round with a neurologist who performed countless tests and evaluations, but declared there was nothing wrong with me. Despite my inability to drive, walk, lift my kittens or work, he sent me on my way, MRI films in hand. He told me I definitely do not have MS, and I should call him next time symptoms appear and we would start the tests over again. It was a dark day.

All my own research made me suspect MS and my general physician agreed. Upon my request, he made a call to a well-respected teaching hospital a few hours away.

Two months later, my then fiance (now husband) and I walked in with those MRI films from the first doctor and I was examined by two top-notch neurologists. They left the room with the films and returned only moments later. “Have you looked at these films?” one of them asked. Yes, we had. The other doctor said, “All those white spots…that’s MS…however, we’re going to have to do some tests to rule out other possibilities.” In the meantime, we were given an armload of information regarding MS medications and told we would need to make a decision regarding which one to try first.

A couple of weeks later, after a myriad of tests indicating the presence of no other diseases, I received an email from one of the doctors asking if I’d made a decision regarding the medication. I replied by asking if this meant they were giving me a definitive diagnosis of MS. The reply was affirmative and my chosen medication was prescribed.

MS by email. Not how one envisions receiving such news.

How did you learn you had MS? Share your story with MS Maze. Comment below or email Mandy at: mandycane@comcast.net

I watched a report on this evening’s news which brought to the forefront all my own personal fears regarding health care in America.

The story centered around a twenty-something year old woman from Illinois who fought and won her battle against mouth and throat cancer. She said that when she fought cancer, she believed it to be the battle of a lifetime. Unfortunately, winning that battle only led to another, equally formidable opponent. Though she had health insurance, her share of medical bills has caused her to lose her home, deplete her retirement account and file for bankruptcy. The still growing pile of bills fills a cardboard box and she still requires treatment.

So there she sits, still in her twenties and a cancer survivor. She feels completely hopeless about her financial future. Officially bankrupt, she has no hope of ever fulfilling her financial obligations, becoming a homeowner again or having a decent credit rating. As she put it, “You are all just one cancer diagnosis away from bankruptcy.”

What a sad commentary on our country that hard-working citizens who HAVE health insurance can be ruined by the unfortunate diagnosis of a health problem.

MS patients usually live a near-normal life span. However, we are plagued by a myriad of symptoms, leaving us partially or completely disabled, and unable to work full time. When my COBRA runs out in a couple of months, I will be in a difficult position.

As a hard-working, tax-paying citizen, I stand to lose all because of the unfortunate diagnosis of MS. Only partially disabled, I don’t qualify for disability. Being middle class, I do not qualify for any assistance whatsoever. In the state in which I live, an insurance company must offer me some type of medical coverage, but there is no cap on the price they may charge. My MS medication costs $16,000 annually, and no generic exists.

Meanwhile, doctors insist on tests and repeat tests. Try this medication, then try that one. You are compelled to submit to expensive procedures without knowing in advance whether your insurance company will cover them, partially or at all. Neither can you comparison shop. Months after a procedure you may still receive bills from providers you never saw, with no explanation for the amount due. Ask for an explanation and it’s voice mail hell and collection agency letters for you.

I am just one of the millions of people in America facing a health care crises. It’s time to stop putting our heads in the sand and admit that, as a country, we’ve got it all wrong. The question is, are we going to do something about it? Those of you still healthy…those of you with good insurance policies…how secure do YOU feel?

Share your story with MS MAZE. Register and post your comments, or email: mandycane@comcast.net. We want to hear from you!

Have you heard about that amazing new diet claiming to cure your MS? How about that bee sting cure? Did you read that you should have the fillings removed from your teeth if you want to cure your MS? Surely those special MS mega-vitamins will do the trick. Or you could have all your blood removed and filtered. Buy your tickets now for that overseas clinic where you’ll finally rid yourself of MS with nothing more than a positive attitude!

There are countless scam artists trying to separate desperate people with multiple sclerosis from their money. They take advantage of the confusing maze of MS symptoms to offer you that glimmer of hope that your physician won’t. Be cautious about promises of a cure. Your doctor isn’t enthusiastically offering you a cure for a reason — it simply isn’t here yet. If it sounds too good to be true, IT IS!

That’s not to say that you shouldn’t try to vastly improve your health. There are things you can do in that regard. Speak to your neurologist about the medications currently available to fight MS relapses. Eat right, exercise, get regular rest, don’t get yourself overheated, and take care of other health issues promptly. Also, make the necessary changes in your life to compensate for disabilities. Don’t be afraid to take charge!

This article from the University of Maryland Medical Center offers some good, solid advice about diet, exercise, cooling methods and prevention of influenza. University of Maryland Medical Center/Multiple Sclerosis/Lifestyle Changes

You know it. I know it. It’s common sense. But it doesn’t hurt to remind ourselves once in awhile of this simple fact.

Just because we have MS, doesn’t mean we won’t get something else.

Multiple Sclerosis varies greatly from person to person. Symptoms are ever-changing. You’ve been played a wild card. Understandable, therefore, that a person with MS would ignore symptoms completely, or simply self-diagnosis them as MS related without contacting a physician.

Don’t let MS fool you into complacency. New symptoms could be completely unrelated to MS. One bad break doesn’t protect you from another. MS and Diabetes. MS and Cancer. MS and Lupus. The possibilities are endless.

If you are experiencing new symptoms, give the doctor a call. It could save your life.

MS and Urinary Tract Infections

Did you know that 90% of people diagnosed with multiple sclerosis experience urinary tract dysfunction? Did you know that urinary tract infections can mimic all the neurological symptoms of an MS exacerbation? Did you know that in many cases, antibiotics can clear up the infection and reduce those neurological symptoms?

So before you dismiss your symptoms as something you just have to live with, contact your neurologist and inquire about UTI. A simple, painless and inexpensive test can give you the answer you’ve been waiting for.

My own first hand experience on this issue confirms that an exacerbation is not necessarily just another exacerbation. Check it out and get the facts.

For more information, please read:

Urinary Tract Infections May Trigger Relapse in Multiple Sclerosis
Metz LM, McGuinness SD, Harris C
Axone 1998 Jun;19(4):67-70
Multiple Sclerosis Clinic,
Foothills Hospital,
Calgary, AB

Get a Handicapped Placard for Your Car

Apply for a handicapped placard for your car. You can download and print the application directly from the Department of Motor Vehicles site in your state, and they are valid throughout all fifty states. Each state has its own regulations, so check it out online or by phone before taking a trip to the DMV.

A physician’s signature will be required. Ask your doctor to sign for a permanent placard. In my state, Virginia, I was able to choose either a handicapped license plate for my car, or the placard which is placed on the rear view mirror. Choosing the placard will enable you to take it with you when you are a passenger in someone else’s vehicle or when traveling out-of-state.

A personal pet peeve of mine is seeing these placards hanging on the rear view mirror while the car is on the road. Please, please, please, remove the placard when driving and keep your view open! You only need to hang it when parking. Also, please don’t lend it out to others. It’s just not right, and it’s against the law.

On another personal note, I choose to use mine only when necessary. When I’m in a remission, I save the treasured handicapped spaces for those who really need them and get myself some much needed exercise in the process. It’s a win, win situation.

When you do need it, however, don’t hesitate to use it. You may feel conspicuous getting out of your car and walking, while appearing to be perfectly healthy to others. Don’t let it bother you. YOU know you need it and only you know what a huge difference it is making in your day. It’s another tool at your disposal to help keep you independent. Take charge and work the maze!

Those of us who have multiple sclerosis are very fortunate in a great many ways. There are much worse scenarios in this world and people with MS generally live a near-normal life-span, although with various degrees of disability.

On the flip side, there is an emotional toll due to the roller-coaster nature of the disease, the many unknowns which still exist within the medical profession and the lack of comprehension by the general public. Furthermore, patients face the difficulty of trying to compensate for disabilities which are ever-changing.

What about when I wake up tomorrow? Will I need someone to drive me around? Will a cane do? Should I purchase a wheelchair now? What if my arms don’t work and I can’t propel the chair? Will I be able to shower/shampoo adequately? Will I regain vision in my left eye? And so it goes in the mind of an MS patient.

There is a financial price to be paid as well. Medications currently available for MS can run up to $16,000 annually, and that’s just basics. Add to that medications prescribed for individual symptoms and complications from MS, steroid treatments, neurologist visits, physical therapy and various tests such as the MRI, which can keep tabs on progression. Medical insurance? A complicated issue for another post, but suffice it to say that insurance companies are not lining up to solicit this writer’s business.

What a glorious day, though, when you can get up, walk around, be self-sufficient and independent! Savor that day! Revel in it! Appreciate it! Take charge and use it to its full potential.

Make the choice — every single day — to take on what you can and not dwell on what you can’t. Don’t give up the ship just yet. There’s a LOT more to you than your MS.