Medical Update plus this 'n that

Well, it's been quite a month.  I've been up and down and sideways (kind of like an episode of LOST - any fellow LOSTIES out there?).  Where shall I start?  Well, I got the results of the two MRIs.  I had a follow up appointment with Dr. Dunn on 5/11/10 when he and his assistant Jong-mi Lee went over the results in detail, showing me the actual pictures and giving me a copy of the written report.  If anyone wants me to email them a copy of the report, just let me know since I've scanned them onto my computer.  The brain MRI didn't have any surprises, but the one on the spine did.  It showed something they referred to as an "enhancement" or "inflammation."  It looked like a grey blob (sort of like The Smoke Monster, again for you fellow LOSTIES), as opposed to the normal lesions found on MRIs for people with MS, which are stark white blobs.  The doctor was concerned about this.  He said that I now fell into a hybrid classification, part Secondary Progressive, part Relapsing Remitting, since this enhancement was considered to be a relapse.  That means that I now qualify for the interferon drugs, which only help with Relapsing Remitting MS, and which I had successfully avoided for 15 years.  I do not like these drugs.  First of all, they are injectables, which means you have to give yourself a shot, either daily or weekly.  Second of all, they come with a whole passel of side effects (I used passel instead of shitload which is what I really wanted to use).   You can look them up under their names - Avonex, Copaxone, Betaferon.  There are also some oral drugs coming out in the next few months, but they carry possible side effects of several kinds of cancer and they didn't think that was a good idea, given my history with cancer.  The reason they want me to take one of these drugs is because if I were to get a second instance of enhancement, it could seriously impact my mobility.  This current enhancement is probably why I've been having the problems walking that I've had the last year.  Of course, there's no way of knowing how long it has been there since wonderful Kaiser hasn't let me have an MRI SINCE 1998!!!  Ok, no more venting.

So, that's the worst of it.  They gave me an armful of articles, books, and DVDs to study on these drugs so I can make a decision of which if any I would take.  I've pushed it to the side of the table for now, just not wanting to deal with it for the moment.

I did keep my appointment regarding the Walk Aide, but it's not appropriate for me right now.  Which is a good thing, since it costs $5,000 and is not covered by Medicare, thank you very much.  It's only covered for partial spinal cord injuries.  Go figure.  I'm thinking it might be covered by insurance by the time it would be appropriate for me.  So I've crossed that off the list for now.

I am taking the new oral drug that just got approved by the FDA in January, however.  At first the company (Ampyra) told me it would cost me $366 a month because of the infamous doughnut hole in drug coverage, and I was going to pass on it.  But then I got a call from Ampyra's Patient Assistance department.  They sent me a 2-page application telling me to fax it back along with the first page of my tax return.  Luckily, I had filed on April 15th for the first time ever and so didn't have to use that pesky 2008 return with the sale of the stock, and my application was processed and approved the very next day and I'm now getting the drug FOR FREE.  Hallelujah, some good news at last.  They shipped a month's supply right away and I received it within two days.  I started taking the pill on Saturday, May 1st.  For the first three days I experienced some slight dizziness and a very slight headache, but that's all.  Other possible side effects include constipation, insomnia, back ache and possible seizures, but I didn't get any of those (I wouldn't know about the constipation anyway since I've been dealing with that since college and I take enough stuff for it that it wouldn't be a problem).  I noticed immediate benefits - I had more energy, got more done in a day, and was able to walk better.

Then I had a little "contretemps" (that's my new favorite word of the moment).  When I saw Dr. Dunn on 5/11, both he and Jong-mi encouraged me to take a second pill without waiting for 12 hours to elapse on days when I had plans in the evening and might need more energy.  The directions with the drug made it very clear that this was a time-release drug and that under no circumstances should you take more than one pill in a 12 hour period or two pills within 24 hours.  I had decided to take only one pill a day since by the time I would be taking the second pill it would be close to bedtime, so why bother, and why risk experiencing insomnia.  HOWEVER, I was a little bummed after hearing the results of the MRI so I decided to go shopping at Ross on the way home, and so I was exhausted by the time I got home, and Dick was coming by that evening.  So I decided to take a second pill, even though it had only been around 5 hours or so since I'd taken the first one.

NOT A GOOD IDEA.

I had an immediate reaction, becoming very dizzy and experiencing flu-like symptoms.  Luckily, Dick did not stay very long, and I ended up going to bed early without even having dinner.  Now, I take another drug called Levothroid for my thyroid.  I normally take it in the middle of the night when I get up to go to the bathroom, since you're supposed to take it on an empty stomach and an hour before you eat anything.  The next morning I woke up still very dizzy and not feeling well.  This was puzzling to me, since each pill should have stayed in my system for only 12 hours, and it was more than 12 hours since I'd taken the second pill.  I was so dizzy that I was afraid to drive to work.  Well, it was about an hour later that it suddenly hit me that not only had I doubledosed on the new MS drug, I had also doubledosed on the Levothroid.  I'd taken it before going to bed since I obviously had an empty stomach and wasn't planning on eating anything until the next day and I might end up sleeping through the night since I didn't feel well.  The only problem with this is that I didn't sleep through the night, I got up around 3 AM to go to the bathroom and totally forgot I'd already taken the pill and so took it again.  My my.  It took a couple of days for all these drugs to thoroughly leave my system and the dizziness did not go away until Thursday or Friday.  I'm back on the Ampyra but it doesn't seem to be working as well for me now.  I'm going to stick with it though.

Now for some non medical news.  I've had some happy things happen.  My wonderful friends Ulla and Joachim Halbach, whom I know from the year I lived in Munich and with whom I've stayed in touch all these years, came to the Bay Area.  They moved to Vancouver, Canada from Munich not long after I moved to California.  I've visited them several times in Vancouver and they'd visited me several times in San Francisco, but I hadn't seen them for around 15 years.  We had a wonderful visit.  They spent the day with me on Sunday, May 2, stayed overnight in Redwood City, then they left for the Carmel/Monterey area, and then spent Saturday, May 8th with me before flying back home.  We picked right up where we'd left off and it was as if we were still in Munich.  We shared lots of wonderful memories - trips we'd taken together, parties, meals, friends.  It was a real boost.

Another happy surprise was suddenly hearing from a high school friend who'd found me on Facebook.  We had not been in touch since high school (1963), yet you'd think we'd been friends all these years too.  Her name is Lyn Lederman, she lives in Los Angeles, and we've been emailing each other multiple times a day for the last few weeks, sharing music and YouTube videos, etc.  She even sent me a care package of Tom Lehrer CDs, which I can't wait to start listening to.  If any of you are not familiar with Tom Lehrer (and shame on your parents if you are not, you've obviously had a deprived childhood), you must go immediately to YouTube and start listening to him.  Trust me, you will not regret it.  Just picture this delightful ditty "poisoning pigeons in the park" plus the "Vatican Rag" and you'll get the idea.

Another happy occurence involves Social Security.  You might recall that Social Security had decided to deduct an addtional premium of $176 a month based on the huge amount of income on my tax return for 2008 (the sale of the stock).  Well, I wrote them a letter asking that they reconsider, enclosing a copy of my tax return for 2009 and of the divorce papers I'd filed, and I just heard back a few days ago that someone new had reviewed my case and decided in my favor and they not only will not be deducting that anymore, they reimbursed me for the three months they'd been deducting it.  Thank you, God.

Well, this has turned into a very long post.  Some of you might have fallen asleep by now.  By the way, the beautiful rose in the photo is one Carla has given me from her garden.  My apartment is filled with beautiful flower arrangements that she's given me in the last few weeks.  She and I are getting ready for the arrival of two delightful British ladies (or as we've been saying, The British are coming, the British are coming).  They are mother and daughter and they spent a day with us last Spring when they were visiting San Francisco.  Carla met them when she went to England for that wedding last year.  Well, we all had such a good time that this time they're staying for 5 nights in Redwood City no less, (at the wonderful Sofitel Hotel - I sent them a full report after staying there with Trish).  We're making dinner for them tomorrow night after they arrive and I'm taking Friday and Monday off so we can play with them.

I think that's enough news for now.