MS Maze

What if doctors discovered that you have a precursor to multiple sclerosis… would you want to be told? If so, what would you do with this information?

Advances in medical science are testing our boundaries in ways never before imagined. How far into the future do we want to see, and what if we are wrong? With our health care system in crisis, who among us would want to have the possibility of future illness or disability on our medical records?

Read:   Precursor to MS… Too Much Information?

The ongoing controversy over Tysabri, understandably, has many multiple sclerosis patients on edge. Count me in.

You can read the rest of this SharePost by visiting:
Tysabri: It Comes Down to Choices

And the saga continues. Month #3 on my new insurance and still trying to get my MS medications without completely loosing my grip.

Month #1 proved to be a nightmare of phone calls, emails and the threat of my head exploding. Mind you, I was not asking for anything special. Just what my insurance policy promises — a one month supply of MS meds at my maximum out-of-pocket of $500 per script per month for Tier 4 drugs. It is what I signed up for and what I pay for, but find so difficult to get.

Month #2 was only slightly improved. Lots of apologies from the insurance company, but the bottom line was that the only pharmacy they allow me to use can’t access my insurance information properly and insists on charging me several hundred dollars more. More phone calls… you know the drill.

Month #3 has arrived and I felt very hopeful. An insurance company customer service representative actually contacted me first. She wanted to assure me that they would expedite this month’s refill, while making it as easy on me as possible. She told me that she was going to contact the pharmacy immediately and override the system. All I needed to do was call the pharmacy and give them the okay to ship. I thanked her profusely and happily hung up the phone. At least this month I won’t have to beg for what is rightfully mine! Now we’re getting somewhere!

I waited two hours, giving them time to finish their task, and called the pharmacy. Voice mail. Wait… wait… wait. Finally, a human being. We went through the process, playing twenty questions, and then I inquired as to the charges. Uh oh. $280 over. The pharmacy claimed that they have not gotten a phone call from my insurance company since last month’s fiasco. Great.

So, back on the phone to the insurance company. Voice mail system. Wait… wait… wait. I asked for the customer service rep who called me earlier and ended up in yet another voice mail system. I called back and asked for the rep I spoke to last month and, naturally, got voice mail.

Now into Friday evening, I guess I will face the hassle on Monday. Deep breaths, and I shall try not to loose my grip.

Oh, what a pleasure it would be to inform the insurance company that they do not meet my standards and I will bring my business elsewhere! Oh, yeah. I can’t. This is the only insurance company in my state that will give me any coverage at all… and only because it is required to by state law.

Equally wonderful would be the opportunity to choose another pharmacy, one whose representatives treat me with dignity and must court my business. But, again, this is the one and only pharmacy I am allowed to deal with.

It’s a great system we’ve got here.

Last month, I wrote a post about the difficulty I had in securing my multiple sclerosis medications through my new insurance company. After that horrendous experience, they cautioned me that things may not be easier next time. Well, they got that right.

Month number two with new insurance proved every bit as frustrating. I have no choice in pharmacy for these precious injectable drugs. Insurance company allows but one, and they are an unpleasant group at best. They still wanted to charge me more than my maximum monthly out-of-pocket. Interestingly, they wanted to charge even more than the previous month.

Not receiving the promised return phone call, I had to brave the voice mail system once again to speak to a customer service rep. Both she and her supervisor, insisted that I was wrong… that it is entirely my problem… that they would not contact my insurance company to straighten this problem out.

A series of frustrating calls… and days later, my meds were ordered up at the correct co-pay. When I asked the representative from my insurance company if this would be rectified before next month’s supply is needed, I was told that no, it probably would not. So sorry, and all that…

So, next month we get to play this game all over again. First shell out $1,100.00 per month — minimum — then fight, plead and beg to get your much-needed medications. Ain’t it grand?

How many times have we been given the advice from doctors, friends, and even strangers, that we must learn to reduce stress so as not to aggravate our MS?

To all those well-meaning folks out there, the reality is this. If you have a major health condition such as MS, and you do not have access to group health insurance, you are in for a world of stress.

Having multiple sclerosis and applying for individual insurance coverage is enough stress to send a person right over the edge! Ironically, the first thing a doctor will tell you upon diagnosis is that you should limit stress in your life. Just one of life’s really bad jokes.

A little background: My COBRA period ended on January 31. Months of trying to get accepted, attempting to get quotes, etc. ended with us taking a fairly horrible health insurance policy. One which we took great pains to understand completely.

So here’s how it breaks out:

$520 per month (at least for now) for insurance premiums
40% copay on prescriptions
$5,000 medical deductible + $5,000 prescription deductible + $10,000 specialty drug deductible
specialty drug max out-of pocket = $500 per script

Not a pretty picture to begin with, but it is what it is.

Naturally, the insurance change required a pharmacy change. This involved:

Calling insurance company to confirm $500 max out-of-pocket per month
Getting pharmacy one to fax prescription to pharmacy two
Calling pharmacy two to see if mission accomplished
In addition, they need the doctor to call and confirm
Call doctor and wait for response
Doctor calls pharmacy to confirm
Call pharmacy to arrange shipment
Pharmacy is ready to ship but insists on 40%, considerably more than $500

Already several weeks into this process, I must start back at square one, the insurance company. I finally cut through the voice mail/hold system, which I suspect is the ninth circle of hell. The highly enlightened person on the other end of the phone tells me that the “out-of-pocket” expense of $500.00 listed in my recently received “welcome” packet, refers to the insurance company’s pocket, not mine. No amount of logic could convince her otherwise. No supervisor to disagree with her.

The same well-informed woman tells me that really should speak to my doctor — because if he would simply write me a prescription for a generic, I wouldn’t have this problem in the first place.

Hmmmm…….wasn’t she helpful? If you are reading this and do not have knowledge of multiple sclerosis medications, the average cost is $1,700 per month. There is NO generic. I don’t know what planet she was originally from, but “out-of-pocket” has always meant the patient’s pocket. I wonder how big a bonus she gets if she aggravates the patients enough to make them go away.

Well, hubby had lost all patience by then. He got in on the fight. Back and forth we went until finally, tomorrow, I will receive my first shipment from my new pharmacy at $500 per month, as stated in my “welcome” packet. And it only took one month, dozens of phone calls, a bit of high blood pressure, and some of that wonderful stress I’m supposed to avoid. We narrowly escaped the ‘ol “bait and switch” routine.

Oh, yeah. They hinted that I may have this problem next month, too. Ahhh…something to look forward to. You see, they had to perform an “override” in the system and have yet to permanently correct the problem. So sorry and all that.

Such is life with chronic illness.

On a final note, it’s hard to get too excited about our victory. Afterall, how long can a middle class family carry such a load?

Research suggests that they may stave off increasing disability. The catch is that the MS medications currently available do not come in generic form and they place an enormous burden on the family finances.

As they say, “I have but one life to live,” so we need to do all we can to keep the MS under control. Our very future is at stake.

On one side of the scale sits MS disability. On the other sits financial security. Hovering in the background are the other expenses of life including housing, utilities, fuel, food, clothing, children, etc. And my MS does not protect either one of us from other health issues. So we look at the scale and we consider all the possibilities.

The answers do not come easily.

From MultipleSclerosisCentral.com: Time Out for Life

I’ve been taking daily injections of the MS medication, Copaxone, since February of 2004. Within the first year I began noticing dents…craters… whatever you wish to call them…in the areas where I frequently injected.

Injection sites are to be rotated on a daily basis — upper arms, lower back, abdominal area and thighs. After awhile, when I began to notice these horrible indentations, which lead to large bumps in surrounding areas, and I was horrified. Was I just aging badly? Had the MS slowed me down to such a degree that I was completely out of shape?

I suspected the Copaxone because of the areas which were problematic. However, my upper arms showed no such landscape flaw. What is a person to make of that? Last year, with bathing suit season approaching, I decided to bypass my thighs for injections to see if it made a difference. It took a good six months for improvement enough that I felt I could be seen publicly in a bathing suit, but that experiment lead me to believe that my Copaxone suspicion was correct. Of course, other areas were even more bumpy.

Now, within the span of just a few short days, I’ve happened upon two sites which speak of this very horror! So, the verdict is in…I am NOT crazy! It IS the Copaxone. Well, there’s nothing which can be done about it, but how wonderful that I’ve been vindicated! My upper arms are unusually thin and that probably explains the reason why they take the Copaxone so well — no fat.

The point here is that those of us with multiple sclerosis experience the strange and unusual on a daily basis. We wonder if we’re alone. We blame ourselves. We question ourselves. We feel alone even when our loved ones go above and beyond the call of duty. Our experiences are unique — until we reach out to others with MS. Voila! No longer are we unique or alone. We are one of many. The lesson is that we should never assign ourselves to that lonely slot. We must communicate with each other. We must support each other. Only then can we truly live!

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 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

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

“MS? Oh, that’s not a big deal. My cousin has MS. She doesn’t even take medications and goes skiing, running and hiking.”

While a great many people with MS do go about their daily lives with little or no problem, remember that MS varies greatly from person to person, from benign cases to complete disability.

Naturally, we are thrilled for those who don’t suffer disability and, in fact, find hope in those cases. But dismissing someone’s MS by saying that it’s not a big deal can be hurtful. More likely than not, there is a private struggle and very personal symptoms of which you are unaware. No need to offer pity or sympathy either. Just a little understanding.

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.