Multiple Sclerosis and a feeling of strength

Last week I needed to go to Las Vegas on short notice. I didn't have time to worry about the enormous amount of walking or any of the other things that having Multiple Sclerosis forces you to think about.

I wanted to plan trips to LV before, but I was too worried that I wouldn't be able to do all of the walking that you need to do when you visit. I was pleasantly surprised that my Multiple Sclerosis did not bother me a bit while I was there. In fact, the blister I had on my foot bothered me more. The fatigue and the walking did not phase me. I felt very strong.

Perhaps this was because I took 1/4 of a tablet of Provigil. Perhaps it was because I had no time prior to the trip to allow the Multiple Sclerosis to stress me out. This was very interesting to me. Because I did not worry about it, it may have been easier.

I was also worried because my last trip to Chicago 6 months ago left me with a relapse during and after the trip. However, I did not do nearly the amount of walking and I did a whole lot of worrying prior to the trip regarding how the trip would be with my Multiple Sclerosis symptoms.

So, my take away from this experience is that I worry too much about me and the Multiple Sclerosis. If I just let it be, it will all be fine. Even if I get real tired, I can just relax or amend my trip to suit my needs. I believe I will not stress out anymore about trips. I need to live my life to its fullest and enjoy every precious moment.

Multiple Sclerosis and Swimming with Fins

I am a big advocate of swimming.

- It is a great workout.
- It is trimming my thighs and butt.
- It is strengthening my legs (my right leg is weaker due to multiple sclerosis)
- It is helping me keep the strength in my right arm (again weakness there is due to the multiple sclerosis).

I am a big fan of the water workout because I believe it enables me to fight hard to keep what my multiple sclerosis takes away from me. It also gives me an amazing sense of power over my body. There is nothing like kicking and soaring through the water.

Now, because I am weaker on my right side, sometimes my right leg is struggles more as I am swimming. I have been swimming laps three times a weak for three months and I am definitely getting stronger. That is why I thought it was time to venture out more...

My friend ordered Zoomer fins for us to pump up our swimming workouts (she, too, has multiple sclerosis with one leg that is weaker than the other). After just the second time using them:

- I fly through the water (which makes me feel even more powerful, despite the multiple sclerosis)
- I discovered that it is a much better workout for my legs
- I believe I will build up more strength and be able to walk better (which is huge)

I love them and I love swimming even more now. Working out is one of the best ways we can fight the damage that having multiple sclerosis does to our bodies.

Multiple Sclerosis and My Doctor Visit

My doctor has talked to me about participating in an upcoming drug study related to multiple sclerosis. This is not a study for a multiple sclerosis disease-modifying drug but rather a test to see if those of us on Rebif and Betaseron are developing antibodies to the drug. If you develop antibodies to one of these drugs while taking it, the drug may no longer be effective for you in dealing with your multiple sclerosis.

I thought the premise of this study was very interesting. They are measuring whether or not you build up antibodies and then evaluating whether or not your doctor does anything with the information (at least that is what I understand). Will your doctor recommend a different disease-modifying drug if you develop antibodies toward your current therapy? Have we all developed these antibodies to our DMDs? I was in awe that our doctors wouldn't be doing this anyway and letting us know if the drug they prescribed for us was no longer effective.

The promising thing for me was that as I was parting from my doctor, she was very excited about what is on the horizon with new multiple sclerosis drugs -- particularly those that are in oral form. This made me very hopeful - as my doctor (like many others) knows there is simply not anything to help someone with multiple sclerosis to eliminate it from their lives.

I believe there will be something within 5 years that radically changes how multiple sclerosis affects our daily living.

Oral drugs for Multiple Sclerosis

Have you seen the press on the two oral drugs in testing for Multiple Sclerosis? There may be more but there are two oral drugs that have come to my attention over the last week. This is interesting to me in my fight against multiple sclerosis because:

- I hate shots
- I am going to participate in an oral drug therapy test
- I have a dear friend, who like many others, simply refuses to take shots as they are painful and she is just not sure about their effectiveness in Multiple Sclerosis as the results are moderately promising (however this is the only thing we have)

I am so excited that multiple companies are coming up with oral alternatives to the drugs available for Multiple Sclerosis. The two oral drugs that I have heard of recently are from Serono and Merck. They are daily drugs that work differently than current shot therapy for Multiple Sclerosis. The drug trials (both are in Phase 3, I believe) should help unveil any side effects or complications with these drugs. It is also not known when these drugs will be available -- possibly 2-3 years. However, the drug companies are looking at how they can treat all forms of Multiple Sclerosis and not just relapse remitting.

My personal hope is that the drugs will be available before 2-3 years. I can not endure one more shot than I need to -- however, I have been on either Copaxone or Rebif for two and a half years. I am going to be in a drug trial for one of the oral drugs soon so I will be off the shots for a while. This makes dealings with Mutiple Sclerosis just a little bit easier.

Multiple Sclerosis - Energy Needs

I am a pretty high energy person (or at least I used to be before the multiple sclerosis) and I have found these two things to be exceptionally helpful in fighting the fatigue that just started hitting me over the last several months. I thought maybe I was just tired but fatigue is more than being just tired and it is very common in multiple sclerosis patients. It is the feeling of exhaustion before you even get out of bed in the morning. It is the lack of desire to even move. It is awful. Here are some things have make fatigue (and therefore, the multiple sclerosis) so much more bearable:

B12 – I take either sublingual B12 or liquid as I believe it acts quickly. Mo told me about this and then I found out that it is commonly used in the world of multiple sclerosis.

Provigil – Some people find that this drug gives them energy but I find that it clears my head and helps me be sharper. My doctor prescribed this for me when I told her I regularly experience brain fog. One of my support group co-leaders believes in its anti-fatigue properties. I take one quarter of a pill on the occasional day that I feel foggy and I know that I need to be sharp all day. I rarely use it (although it is beneficial) because I only want to take the medicine that I absolutely have to like disease-modifying drugs and…

4AP or 4 amino pyridine – this is a compounded drug that acts like a wonder pill for me. I don’t always take B12, but I can’t wait to wake up and take my 4AP. I take it three times a day and am anxious and ready when it is time to take again. The downside of this drug is that some insurance companies may not cover it because (as I understand it) it is not a manufactured drug but rather a substance occurring naturally. However, I would likely pay a lot of money and sacrifice other things to take this compound. When I asked my doctor about the side effects of 4AP, she indicated that I may experience better mobility. How about that!

4AP is the most effective thing I found to help deal with some of the effects of multiple sclerosis.