There's Always Room for Cookies: Notes from Baltimore

I have so much to write about, I decided to break apart our Baltimore notes from the Johns Hopkins notes. So Thursday, I had my appointment at 8:00 am but were told I must be there by 7:30. So we got ready and caught a cab at the hotel. We ended up getting there a little early....7:20. In fact, they weren't even open yet but the person let us in and let us sit inside....which is nice because....9 degrees.

I got checked in and waited until I got called back. About 8:15, they called and back I went. They wanted to watch me walk and check my vitals while I walked. Then I went to a room to give a resident student my history. They had all my records I submitted to get an appointment. He said there wasn't much...only 40 pages! And I gave him my new stuff...all my records since October. Additional records I found after I mailed in the first set. CDs of my recent scans. And lab results. We went through my whole health history and my history with my myositis. The resident was very nice and was friendly to talk too. He then had me put on a gown so he could do some testing. No pins which was nice but lots of "pull and push...push...push"...no Alexis...really try. (I was.) He noted some significant weakness which wasn't a surprise to me. He did have me walk on my toes the best I could and my heels. Up and out of a seat without hands. Then I waited a few minutes for Dr. Christopher-Stine. It was about 9:40.

Dr. Christopher (that is what the team called her) came in and had already gone through all my records. She remembered me from the conference and we hit the road running. Here is a recount of what she recommends.

1. Lose weight. A lot of weight. It will take a year or more. I expressed my frustration with weight loss and not being able to lose any. She said the trick is no "white". No bread, rice, potatoes. Mix in greens and high proteins. It will be hard but it will be worth it. I will be more mobile if I get off the weight. She said this is the single biggest thing I can do to feel and move better.

2. Exercise - She recommended PT but with someone who specializes in Myositis (good luck). She wants a weekly strength test called MMT8. I have not had any success finding a PT that knows Myositis although when I was at the Neuro PT center, it was close. I am actually going to go back to the gym to start and see if I can make some headway.

3. Stop Methotrexate - She didn't feel it is helping me at all. She said she rarely sees people on it as long as me. I've been taking it since November 2008. She said to stop it cold turkey is fine and it will take 1-2 months to get it out of my system and see how I do. She really didn't make any suggestions what we would do if it doesn't turn out well. She is that confident it won't matter. This is huge to me because Methotrexate is a chemotherapy drug and has all the side effects of chemotherapy but because I take a smaller dose, it isn't as pronounced. It suppresses my immune system, thins my hair, ruins my liver and kidneys (so I can't drink alcohol), and makes me sun sensitive. Not to mention the fatigue and change to taste buds.

4. Check CK monthly - this is the blood work I have each month to check my muscle injury. She wants me to keep having this done.

5. Come back in 6 months - She would like to see me in 6 months. I agreed I would. I am coordinating that now. Hopefully I can time it with a graduation trip with Philip to DC.

6. Get a myositis panel lab - I've tried to get this done here but no one knows what it is. So went ahead and had it done there. It is sent off to a special lab in Oklahoma. I won't have results for 3-4 months.

7. She felt my diagnosis was correct but she called it Atrophy Polymyositis. She said the disease appears to have "burned out". Not sure what exactly that means but she said it isn't active. On further testing, she did say it is suspect I have Inclusional Body Myositis (IBM) but she wants to see my myositis panel before exploring that further. IBM sucks. There is no treatment for it. But knowing would be good instead of wondering why I don't feel good. She did not feel I had MD. That is a relief.

More on the atrophy - she said my MRI showed I had significant atrophy in my thigh muscles. This means the muscle is dead. You cannot revive an atrophy muscle but you can build the surrounding muscle. So that is my goal. I probably won't get significantly better but keeping what I have and not lose more is important. She did say I didn't do anything to cause the atrophy. It is part of the disease. So even if I exercised regularly, I would have still had atrophy (I can let go of the guilt now).

It was a really good visit. I feel so incredibly lucky to have the chance to go to the Myositis center and see Dr. Christopher. She really is a passionate doctor looking to make life better for us Myositis people.

A really funny ditty.....

When our cab driver dropped us off at the Hopkins building, I asked if he had a card so we could call for a return cab. He said to just have the facility call us a cab....until I paid him. I admit I gave him a $9 tip but he dropped us off at the back entrance right by the door and out of the snow and ice. Because I gave him a big tip, he said "Wait a minute. Maybe I will give you my number for a return ride." HAHAHAHA. So we did call him and he did come get us without delay. To me, that is money well spent. There were no other cabs around.