The Visit With the Specialist

So we had another appointment with Dr.Okai, the MS specialist that I have been seeing, on Friday! I really think this was the best visit so far!! Plus it was another chance to get out of town for a day or two, which is always nice. Its nice to get a break from the day to day life. We even decided to not have any plans at all this time! Its nice to not be on a timed schedule! So we decided against going to see Dick Van Dyke and just see where the trip took us! So here is our trip and what we learned at the Dr. appointment.

Thursday started our mini-vacation! Dallas is about 6 hrs away from home! So we have quite a drive in front of us. We stopped to eat at a place we have eaten at before but never for dinner! It’s called Smokestack Restaurant. Like I said, we have stopped in there a few times before but it was always at breakfast time! Stopping there for dinner was unheard of before plus we learned that their Chicken fried steak was voted the best on I-20!! That was what we had for dinner. It was very, very good but my wife said it best when she said that it tasted like the chicken fry i cook at home! So I kinda understood then why it tasted so good! lol

We got into town and checked in at the hotel! Time for a good nights sleep!

The Dr. appointment was at 10:30 so we got to sleep in a little bit and we still managed to get there about 30 minutes early! While sitting in the waiting room the Dr., herself, came out to get me to go down and get blood drawn for the JC Virus test. That is to see if I have the virus or not since all of the people on Tysabri who have presented with PML have been positive for the JC Virus! Now, not having it doesn’t necessarily mean that I won’t get PML. It just means that the chances are lower! Which is a good thing! I’m not sure how long it will take to get the results back but she said that if I hear from her it’s positive, if not then it’s negative! So I will either wait for a phone call or not. Seems kinda pointless to worry about it right now! Lol

Anyways, I got my blood drawn and went back to wait for my actual appointment! Which didn’t take long! Got back there and as soon as she walked in the room, Dr. Okai, realized that she forgot that I needed complete blood work done since this was my three month visit since beginning Tysabri! She was very aggrivated with herself since this meant I got to go get stuck again for more blood! Lol Oh well! I’m kinda getting used to it!

To make this story a little shorter, after going over past complaints that I have had, it was decided that I seem to be going in the right direction! I have had some good improvements in pretty much all areas! I told her about me feeling that I am walking better and my increased energy level even in the heat we have been having! She seemed pleased by the progress!

Now for the discussion time of the visit! I asked her about the pain in my feet! I said that I wasn’t sure if it was MS related or not so I didn’t know whether to see a podiatrist about it or not. She let me know that it was not MS related so going to see the podiatrist would not be a waste of money like I was afraid of!

I told her about some of the back pain that I have been having and again not knowing if it is MS related or not! That one is MS related and I got some pain meds to help deal with that! So we will see what we get from that!

She asked how I am doing with my moods! I told her that it is still a struggle but if I can keep it in my mind I can kinda control it but it is hard! We discussed that and decided to go up to 100mg on my Zoloft to see if that helps to keep it under better control and maybe then I don’t have to dwell on it quite so much and can go back to just enjoying my life!

I did ask about her thoughts on the CCSVI debate! Had to reassure her that I wasn’t planning on going out to get it done. I just wanted her opinion on it! Pretty much she understands how it could help to alleviate some symptoms but as for it being a “cure” for MS, she isn’t quite so sold! So in other words, she doesn’t endorse it!

She asked my thoughts on what my plans were if the JC Virus test came back positive. I really don’t think I have any plan on changing anything! With all the improvements so far I don’t see any reason to give it up! Yes! I get drowsy after each infusion but that lasts a couple days and then goes away! Then the rest of the month I am feeling pretty good. So why give that up?! I am aware of the risks of PML but I still feel that the benefits at this time are greater than the risks! That response really made her happy! Lol

That pretty much sums up that visit! I did have to go get more blood drawn after we were done but like I said, No big deal! I have to go back in three months for an MRI to see how my brain is handling Tysabri and another check up with her! So we will see how things go til then! Thanks for reading!


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