Mike Has MS
Tuesday, April 24, 2007
Neurology
I had a fantastic appointment with my neurologist today. She’s kind of old school, but damn, she knows her stuff. We went through my entire history, which took about 45 minutes. She told me not to worry about the time because I had an hour appointment and then she had some time until her next one. Who does that anymore? I was telling her about always being wiped out and how I felt. She asked a question I couldn’t answer. She asked if I had ever been tested for allergies to the medication I’m on. She said that could certainly explain some of the side effects I have with both the Avonex and Rebif.
She also explained why so many doctors are keen on prescribing one of the key therapies for MS. A lot of doctors are on the payroll of the drug companies as speakers. She said that she won’t do that because she believes its a conflict of interest. Wow. She said that the MS therapies are used to smooth out the bumps in a rocky road and that sometimes you have to have a rocky road to smooth out. She’s not so sure that the injections are really helping me.
What really impressed me was just how focused she was on my history. So many things that I mentioned showed patterns. No other doctor has ever asked these things before, and it was incredible how she put the pieces together.
So now we’re going to chase down some old medical records and see what more we can do.
Friday, March 09, 2007
MRI Results
My doctor’s office called me today. My MRI results and bloodwork came back. My general health is good. All of my tests came back normal except my cholesterol. It was low at 106. Yes, I said it was low. That’s certainly a good thing.
The MRI, on the other hand, shows some white spots, which appear to be in line with having multiple sclerosis. They want to see the results of past MRIs if possible. Monday, I have to contact my past two neurologists to get their records, specifically radiology reports. I think it sounds a little more serious than the nurse told me. I won’t know for sure until I see the neurologist in early April.
Oh, and my HIV results are still negative. This is very good.
Tuesday, March 06, 2007
Medicine Woes
I take Rebif for my multiple sclerosis. It’s a thrice-weekly injection that I give myself.
Several weeks ago, I saw that I was running low. So I called the pharmacy that fills it, and they found the first problem. My prescription had expired and they had to get a new one from the doctor’s office. That took a week or so. My doctor’s office is terribly inefficient. Then I got in touch with the pharmacy and they tell me that the insurance is rejecting it because they need a prior authorization. The doctor’s office took forever getting that done, too.
Everything seems to depend on getting the doctor’s office to move, and these people just suck. I’m seeing the new neurologist in a few weeks, and for that, I’m very happy.
I’ve mentioned before that my old doctors’ offices were at the BU Medical Center. It’s not in the best neighborhood. The doctors are decent but their support staffs suck. A friend of mine referred to it as “hiring girls from the neighborhood.” Unfortunately, he has a point.
At this point, the meds will ship tomorrow, and I’ll be injecting again on Wednesday night.
Wednesday, February 21, 2007
Day of Medical Stuff
I had an appointment with my new primary care doctor today. On may way there, I called the pharmacy that ships my Rebif to me. They’re still waiting on information from my neurologist’s office.
When I got to the doctor’s office, my appointment went well. The new doctor seems very nice and he was really great about getting everything rolling for me. He ordered the MRI of my brain and all kinds of bloodwork. He sent me off with a referral and the release forms to get my previous records.
Then I spent all afternoon trying to get my records transferred and scheduling appointments.
Wednesday, February 14, 2007
Changing the Doctors
I went to see my psychiatrist today. That went well. For the first time in a really long time, I feel like the pieces of my life are falling together. This is all good.
One of the things I told him was that I was less than thrilled with my current primary care doctor. I love the guy, but his office staff is awful. My PCP is at the Boston University Medical Center, and I’m just not content. I’ve been trying to find a new neurologist and he hasn’t been too much help.
My psychiatrist is at Fenway Community Health, which is a health facility that caters to the gay, lesbian, and associated communities. So when I was talking to him today, I asked him for a recommendation within his facility. I see the new primary care doctor next week.
The doctors at Fenway are associated with Beth Israel Deaconess Medical Center, one of Boston’s leading medical facilities. That’s where we’ll find a new neurologist. BIDMC the teaching hospital for Harvard Medical School. A cursory search on their site shows several doctors who specialize in MS. That’s a good sign.
Tuesday, October 10, 2006
Numbness
I’ve been under quite a bit of stress lately between work, finances, and this darn vacation. I swear, vacations are supposed to be relaxing. Planning and preparing for them is what I find stressful.
The numbness in my left hand comes and goes. At the moment the numbness in my right hand is more pronounced. Today, I noticed some numbness in my right cheek.
This isn’t that big of a deal and certainly no reason to panic. It’s just a fact of living with MS. Getting away for a few days will be a good thing.
Sunday, September 24, 2006
2007 MS Walk
The 2007 Boston MS Walk will be held on Saturday, April 29. My goal this year is to raise $3000.
Stay tuned for details.
Travel with MS and Meds
I’m going to London in a few weeks. This will be my first trip abroad since being diagnosed with MS. Since I travel periodically with my job, I’ve had to deal with injecting while in a hotel. It’s not really that bad. Getting through security isn’t usually that big of a problem. I did have a situation when I was going through Washington’s Reagan National Airport and the TSA dude started taking my cooler with the meds off the belt while I was still waiting to go through the metal detector. I started making a huge fuss and screaming that an agent was taking my medication out of my sight. I had a supervisor by my side in no time.
This trip will be a little different in that it’s a long flight and a long layover. Once I get to London, putting the meds in Steve’s refrigerator will be the easiest part of the whole thing. Depending on how my med schedule falls that week, I might end up giving my injection on the flight over. I’m not sure I like that idea, though.
I spoke to a US Airways agent, and they said to let the flight attendant know when I got aboard the aircraft that I had meds I needed to keep cold. She said they would at least be able to provide some ice. I’ll take a few plastic bags along for that. I’m sure we can make this work out okay.
My real concern is getting through airport security since my meds are a liquid. However, I also have the prescription label. And duh, they’re in a syringe.
MS Lifelines is sending me a new portable sharps container for the trip. That will certainly come in handy, too.
One of the other things I’ve done, just to be on the absolute safe side, is to register my trip with the US Embassy in London. You can do that via the US State Department’s website. God forbid something happen to me while I’m there, but if the US Embassy gets word that I’m in any trouble, they’ll see that I have multiple sclerosis and take Rebif three times a week. This may sound like overkill. It probably is. The United Kingdom is hardly a third would country. It’s just that the last thing I’d want is to be lying in a hospital in any world country where the doctors don’t know why I have no feeling on the left side of my body.
Friday, September 22, 2006
Having MS Sucks
Today is one of those days where it sucks having MS. I woke up about 4:45 with the worst chills. Part of it was the fact that the window was open. But mostly it was because I had my injection last night and the fever is a side effect of the meds. When I went to get out of bed this morning, my legs just weren’t there. I can’t really explain it other than my legs were like rubber and they did this convulsing shake.
Earlier this morning, I had a dizzy spell. I should have sat down for a while, but I needed to get to work. As I was going down the back steps, I lost my balance and started to fall. I caught myself after falling about two steps, and I’m fortunate I wasn’t hurt. But I scared the shit out of myself.
I need to take it easy this weekend. Some serious comfort food is in order, I think.
Friday, August 25, 2006
Doctor Doctor
Yesterday morning, I was at work and noticed that I had a loose tooth. That tooth has a crown on it, so I was a bit concerned. I called the dentist, and they said it sounded like the crown was loose and that I should come in for them to recement it back on. By the time I got there, it was no longer loose, but out. The crown wasn’t loose. The post that had been cemented into the tooth as part of a root canal is what had come loose. This isn’t good. There isn’t really much of the original tooth left. He was able to cement it back into place, but he said that I need to be very gentle on the tooth and that I really only have a few months left on it.
All six of my top front teeth are crowns, partially because I have bad teeth (genetically) and partially because of an accident I had as a kid. He gave me the option of doing a bridge or an implant. Because the surrounding teeth aren’t in very good shape either, the bridge becomes less attractive. That means my best solution is an implant. Those aren’t cheap. The first up-front expense is the implant itself, somewhere around $2000. After that has healed for four to six months, it’ll be another $400 with the crown. This ain’t going to be cheap. We may be able to get my health insurance to pick up part of the implant surgery costs, though. Oh, tooth number ten, you’re expensive. The other option, provided the “temporary” solution survives through the end of the year is to beef up my flexible spending account and to use that to pay for the tooth. The other question I need to ask is how much of this my dental insurance will cover. The doc seems to think they won’t cover any of it, but their website says they’ll cover 80%. If I only have to pay $400 of this, I can handle it.
And lately, my neck has been hurting. It’s not been getting better, either. This morning, I saw a chriropractic office near Maverick Square on my way to work. I wrote down the number. This morning, I called. I hadn’t been to a chiropractor in several months, and the one I’d been seeing here in Boston just wasn’t making me feel better. My chiropractor in Pittsburgh (Dr. Ian Wagner) was incredible. The guy I was seeing in Providence wasn’t bad. But the guy in the back bay just didn’t impress me at all. I’d been doing physical therapy and that wasn’t helping either. So today, I started chiropractic care here in East Boston. I like this guy, and he’s close to my T stop. After that appointment, my neck immediately felt better. My back is feeling a little better, too.
On top of that, I have an e-mail into my primary care doctor to see where he is on our quest to find me a new neurologist. He’s being picky, and I’m okay with that. I want a good neurologist that isn’t part of his health system and is good with MS. He’s pulling a few strings to find a good one for me. I’ll be patient.