Another brief interlude from the present…An hour late but good news

Today I had my first appointment with my new neurologist.  We were 20 minutes early for the appointment, but weren’t seen until an hour after our appointment time.  I am actually not complaining.  I think I would willingly wait  2+ hours to be seen at this facility.  Admittedly, I would find it easier if I had a good book as a diversion, but I forgot to bring one today.  However, even if I had remembered a book, I was so nervous that I don’t think I would have been able to read a page of it.

I am lucky enough to live in an area that has an abundance of excellent hospitals, including Johns Hopkins.  For MS, they are viewed as one of the best in the country, as is evidenced by the number of people who traveled from other states just to be treated there.    When we arrived at the neurology floor,we became aware of one downside:  they are now charging a “facility fee” of $73 per appointment, since the building is now classified as an outpatient building.  Luckily, if there are no relapses, we should only have one appointment a year.  However it is now cheaper to go to the ER than to go to a doctor’s appointment…not good news for the local EMS crews out there!

The doctor himself came out to greet us and bring us back to the examining room.  He had taken the time to get to know my history prior to this appointment, though he did go back over everything with me.    This doctor was taking over my case from the previous neurologist who had left the facility.  Since I was not considered a “new” patient, he said that we were only allotted 30 minutes for the appointment, but he was sure we would take longer than that since this was our first meeting.  This comment impressed me very much, as did several other things:  He listened respectfully to everything I had to say; he answered every question without talking down to me; he did not look down on me when I told him what it now takes me to get to sleep (which I know is unhealthy); he was supportive when I broke down when discussing how I felt I had lost a lot of who I was in the last two years; and he decided to test me for several possible complicating factors before throwing more drugs at me.  These in and of themselves would have made for a good appointment, but the best part was that he said he saw nothing in my file or my current examination which made him feel that my my subtype had changed from relapsing/remitting to secondary progressive.  That was what I had been really scared about when approaching this appointment.  The only thing that gives me any concern is the fact that I do not have a way to reach him at any time like I did my last doctor, and that ability proved extremely helpful on more than one occasion.  I am also thinking about looking for a more holistic neurologist to talk about diet and lifestyle changes that have proven helpful with other MS patients.  Johns Hopkins is the best, but they are all about medicine.  Many people have had success with more holistic treatments, so I’d like to give that a try too.

One of the other nice things about Johns Hopkins is that you can get everything done in one place.  We said goodbye to the neurologist, sat in the waiting room for about ten minutes, and then had the eye test done.  We went back to the waiting room for another ten minutes and then I was called to get my blood drawn.  The only thing we didn’t accomplish today,besides eating lunch at a reasonable hour,  was an MRI.  We were told that they never schedule them on the same day.   I go back in three weeks for that.

I’d like to thank all of you who wished me luck today and were keeping me in your thoughts.  Also, an extra special thank you to my friend Kim who watched our babies for us today!

To end this post, I must once again express my unending gratitude for the generosity and support being shown to me and my family as we continue to fundraise and recruit walkers for team Next Steps.  We have been more than overwhelmed by those that have reached out to us and continue to do so daily.  THANK YOU ALL!!!!

Next post it’s once again, back to the past.


A brief break from the past for some news from the present

Over the last couple of days, while writing this blog and doing some research on other blogs related to MS, I have been blessed to come across many beautiful and inspirational blogs and to talk to a couple of the people behind them.  I have contacted a few of my fellow blog writers to ask them if they would be willing to help a new blogger out and link my blog on their site.  I, of course, would do the same with their blog.  I know that it is early yet, but I had one, almost immediate, response from Nadja of LIVING! WITH MS .  Nadja not only linked my blog to her site, but she also did a special blog post to introduce me to her readers.  I am very grateful.  Please go on over and check out her blog!

In other news, I have an appointment with a new neurologist on Wednesday.  I’m a little nervous.  My last neurologist left  Johns Hopkins to go to an institution, to do some more extensive MS research.  Though it was sometimes difficult to get an appointment with him, he made himself available by email, and he also gave us his personal cell phone number for when issues arose.  He would call in prescriptions and arrange steroid treatments without me having to go into the office or a hospital.  However, he was strictly medical.  He offered no lifestyle advice or any information on vitamins/herbs which have possibly proven helpful to a person with MS.

I need to be able to connect with a doctor for him to be able to help me at all.  I do not like “feel good” doctors who only tell you what they think you want to hear, but I do like some discussion and a doctor who explains why rather than just stating the facts.

I’m also a little scared that the classification/subtype of my MS will be changed from relapsing remitting to secondary progressive.  After each of my last two relapses, I have retained some altered sensation in my fingers and weakness in my legs.  This has never happened to me before. In the past, I have always completely returned to baseline.  I am not sure if the weakness in my legs is secondary to the MS or to the simple fact that I have not done any type of exercise since before E. was born.  Hopefully the neurologist will be able to tell.

To add a little humor to this, at least for those of you of you who have been living through or following Maryland weather this last week, MS has at least given me a get out shoveling snow free card for our record setting snowfall!  You have to look at the bright side of things or you could spend your life crying.

This appointment is set up as a returning patient (rather than new patient), since they are treating the situation as if he is just taking over for my previous neurologist.  I just pray he has the time and patience for all my questions about the new studies and treatments being discussed, and to allow me to get to know him.  I could use all the prayers, thoughts, and crossed fingers you have to spare.

I would  like to thank everyone who has signed up to walk with Next Steps and all who have supported us in any way.  At this point the Next Steps team has raised $1,975, thanks to very generous friends, family, and the occasional stranger, and we still have almost two and a half months till the walk.  Hopefully this $1,975 will be completely eclipsed by our total amount on April 24th.  Right now we have a fundraising event planned for March 2, 2010 at Cheeburger Cheeburger in Columbia, MD from 5pm til 9pm.  If you are in the area, go to the Cheeburger Cheeburger page on the right side of this page and print out the flyer to bring with you, or just stop in and say that you are there to support the Next Steps team.  The restaurant has agreed to donate 20% of the total receipts to support our team.   That’s quite a deal!  More fundraising events are in the works so please stayed tuned.

Next post…back to the past.