The latest visit with the specialist

We just made another trip to Dallas to see the specialist! This time we took our son with us along with my Mother-in-law! We had a lot of fun!

We went early to be able to take in a few of the sights! We took them to a restaurant called The Magic Time Machine! A lot of fun! The waiters and waitresses dress in costumes and do the whole dinner service in the style of that character! We had Rapunzel! She didn’t have all the hair that you would think but still pretty cool! Our son loved it!! Then we went to the Dallas World Aquarium! He had a ball!! The whole time my wife and I were thinking this was totally awesome!! Also ate at our first Joe’s Crab Shack! Very yummy!!

Now onto the Dr visit! First I had the appointment time wrong! I had it in my head that it was at 10:45. So we were at the hotel getting ready when we got a call from the dr office wanting to know where we were because the appointment was at 8:30! But luckily enough, they were able to squeeze us in when we got there!

Well I found out a few things! First, I am JC Virus positive. Now let me explain what this means. When we were making the decision about whether I was going to start Tysabri or not, we knew of the risk of PML, the potentially deadly brain infection, but we decided to go ahead with it! Then we learned about the connection of PML and the JC Virus. We learned that it wasn’t a guarantee that if I had the virus that I was going to get PML. It just raised the risk a little! So we went ahead with the test! By this time, I had already had about four infusions. I felt a million times better so if I was positive for the virus or not was not going to make a difference for me! It had turned into a matter of quality of life which had greatly improved! So the news of being positive was a little bit of a shocker but it didn’t change anything! Just added something to watch a little closer for!

I also found out that my vitamin D level was a little low. So I need to take between 2-5000 iu of vitamin D a day.

Now onto the questions I had listed in my previous blog! As for the flu shot, I have heard so many different things about a flu shot and MS. Some say don’t do it for one reason or another and others say go for it! So with the divided masses, I thought it best to ask the dr’s opinion! Lol She said that as long as it is not the mist, which is a live virus, it is fine to take! So yes to a flu shot!

I have also been on a gaining trend with my weight and it’s time to do something about it so I asked her opinion. Sadly, I didn’t learn anything that I didn’t know! Take it slow. Listen to my body! Do what I feel I can! Now the task of just doing it and adjusting my diet is always easier said than done! But it must be done so…say hello to my newest New Years resolution. Haha

I had been doing good in the sexual department. Everything worked as it should until a month or two ago. I decided it was time to ask about Viagra. I wasn’t sure if it would work for someone with MS so I just wanted to know. She was more than happy to write the prescription for that and felt that it would definitely work! (sigh of relief!)

I have also been having bowel problems lately and the last time I had these problems I went to our regular dr and he gave me Lomotil to take when I had the ‘runs’. I wanted to ask her if there was any way I could get more of that since I felt it worked better than regular Immodium! She also didn’t have a problem with that so I also have a prescription for that!

I also wanted to talk to her about the Tramadol that she gave me last time for pain! I didn’t really feel that it gave much relief. I hated to even bring this up because I didn’t want to sound like a drug addict but I felt something needed to be done! She gave me higher dosage of that to take once in the morning with Tylenol. She said 325 Tylenol but I’m not sure exactly what that is so time for some research! Will let you know how that works when I know something!

I also asked about what I can do in terms of vitamins to help boost my immune system since the Tysabri can lower that! I feel like I’ve had snot and cough more this year than any before! And once again a simple answer! Vitamin C! So boosting my vitamin C intake to help there!

I really like Dr. Okai!! She is awesome and really doesn’t have a problem sitting and talking about any question I have! She prescribed me to have 6 more weeks of physical therapy so I will hopefully start that soon! thanks for reading and will post another update soon!!

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