Sunday, October 13, 2013

The Conspiracy Continues

And the conspiracy continues.......

This is an update to the health care provider night mares that are taking place where I live.

Most of the neurologists in my city are inaccessible to me and a lot of other "MS" patients.  How is this legal? I don't understand.  Especially since we haven't done anything wrong even though we are being treated that way. Let me back up a little.

Recently, my current neurologist switched to a group that does not accept my insurance.  She is also a professor and she accepted a new and most likely better position for herself.  I don't blame her and I am happy for her but I will really miss her.  She and I speak at the same dinners sometimes so I will still see her every now and then.

Anyways, I called the same neurology group that I dealt with previously and asked if they were accepting new patients.  The answer was yes right.  That's when I gave my name and asked if they received my referral from my primary care physician.  I was told that the doctor has reviewed my file and he saw that I am a former patient of another doctor so he is refusing to take me on as a patient.  Then she tried to clean it up a little by saying that they are very busy so the doctors are taking patients on a case by case basis whether you have MS or anything else.  Yeah ok, whatever.  That's when I requested to speak with a manager.  She was going to talk to the manager and get back to me.  That never happened so 2 days later I called and this time I listened to all my options.  What do you know, there was an option for the "office manager".  She actually answered the phone since she didn't really know who was calling.  She did receive my information so at least the receptionist did her job.  The manager reiterated what I was told before so this time I requested her to send me a letter stating the reasons for denying to see me even though they claim they are taking new patients.  I told her that I need it for my insurance company because I'm hoping to convince them to establish a contract with a new group.

So that's where I'm at right now.  The biggest part for me is maintaining my monthly MS treatment.  I found out that any doctor who is willing to register with the TOUCH program to help manage the risk associated with the treatment can prescribe Tysabri.  That's good news as long as I can convince my primary care doctor to get on board.  Stay tuned for the next episode.............

Saturday, October 5, 2013

Guess What Time It Is.....

If you follow my blog then you know that I am a patient advocate and I have traveled to conferences in Boston, MA for the past 2 years.  It's time to head to another conference for the third year.

At the conference, we receive updates on important things like new treatment developments, government affairs, support for care partners, and healthy living.  I look forward to this every year.  It helps me build confidence when I speak to groups of people about my MS story and how people with MS can take charge of their condition and have a good quality of life.  I connect with other advocates and share tips on how to make a difference in the MS community.

MS awareness has come a long way, but there is still a long way to go.  In light of a cure, researchers are also trying to find ways to repair myelin damage.  At the conference, we learn everything there is to know about our condition and how to treat it.  We really are experts and we take pride in helping to educate our family and friends and other MS patients and the communities that we live in.

Here is my blog post about the first time my husband and I went to the advocate conference in 2011.

Here is my blog post about the advocate conference in 2012.

Thursday, October 3, 2013

Working Around MS.........Update

This is an update to my post Working Around MS

Good news.  The company has agreed to allow me to continue the accommodation being allowed for me.  For 2 weeks, I was very stressed and upset because I didn't understand what was going on.  I felt like I was being attacked due to people's lack of understanding, knowledge and education about my condition.  You see, it's not easy to tell that I struggle with MS daily.  Someone asked me why I don't just go out on disability.  Really?  So I asked them, why don't you just go out on disability?  They looked at me kinda strange and said, "What do you mean?"  And I said, "Exactly"!

I can understand how it might seem unfair from the outside looking in.  You don't know, what you don't know so you assume what you want to assume.  I am guilty about making wrong assumptions about a situation when I don't have all the details.  This has taught me a valuable lesson about assuming and how it can hurt others.  I vow to give everyone the benefit of the doubt and not judge or make assumptions about people or situations that are frankly none of my concern.  Honestly at this point in my life I don't have time to be concerned about what others are doing unless it directly affects me.