Is this progression of MS? Am I typical?

[LATW]

Hello,
I was diagnosed with RRMS last February after two bouts of ON, abnormal MRI, leg that seemed like it was not there, extreme fatigue, bathroom issues, and tests that were normal. I have had a lot of sensory symptoms that include numbness but have never had a limb go completely numb.

I have been on Avonex almost a year.  I sleep a lot but I had to stop taking Provigil because it was shooting my bp up too high. ;(  So I just sleep when I need to now. I feel more rested and feel better. My PT wants me to ask if Provigil can cause weakness and balance problems?

Over the past year the new symptoms I have are progression of weakness, balance issues, and tremors.    I am going to weekly PT and OT. Both have recommended I get  a rollator for in the home and a scooter for outside of my home.

It is confusing when one week I need my walker and the next I am fairly steady. My MS doctor is not completly happy with how I am doing.

I know my question is difficult to answer but is it possible for my strength and balance to get back to normal? My balance is bad enough my PT says I should not be walking unassisted. That is why I have the rollator.  My hand strength is pathetic.  I can not do resistance exersices so they have me doing isometric.

I am wondering how I got here.  I used to be very physically strong for a girl. I could pass a foot ball as far as any guy! But now I am so weak I can not easily lift a one pound weight. How does this happen without me noticing?  I knew things were going on but didn't realize how bad it was until I got into therapy.  I have been over compensating in other areas long enough now I guess I just didn't realize what was happening. I have a great MS specialist taking care of me.


I hope this makes sense.

Thanks,
LA

[Dr. Daniel Kantor, MD]

There are a few questions here.

1. Is your MS progressing as opposed to simply relapsing?

This is difficult to say, but I agreee with your doctor, I am also not happy (and neither are you) with how you are doing.

While exercising, yoga, stretching are all very useful and that is very good advice, your disease modifying agent is clearly not ideal for you. It may be that you were "destined" to progress, but I am dissapointed with its effects on you.

Your MS doctor can speak to this much better than about what type of physical and occupational therapy is most useful (your therapists should be trained to evaluate and know this).

2. Will you get back to your baseline?

This is possible and should be your goal, but it shouldn't stop you from taking care of how you are right now, which may mean using a rolling walker for safety.

3. Can Provigil cause weird side effects?

Yes, every drug can cause every side effect unfortunately. It could also make you feel "wired" or crawling out of your skin, which could make you feel unsteady. High blood pressure may also cause that unsteadiness feeling.

There are other treatment options for fatigue, and they need to be explored: including medicines (such as Amantidine, B-12 and 4-Aminopyridine, to name a few) and CAM (Complementary and Alternative Medicines) and exercise.

[Lulu54]

Hi LA,
Dr. Kantor will see your question and answer eventually, but until that time here is my two cents. No one can predict the course of our MS and where it will eventually lead us.  It sounds like your MS is on the fast track right now. I would start by discussing your DMD with  your MS specialist and see if perhaps it is time to try a different one.  We don't all respond the same to these drugs and sometimes a switch is appropriate.

I don't know what might work for you but here are some other suggestions you might try:

Get in the water - find a swimming pool, heated of course, and start exercising in the water.  We only put 1/6th of the strain on our body by being in the water instead of on firm ground.  Start out slowly with stretching, treading water, or swimming or whatever gentle movements you can do.  Many local MS chapters have aquacize classes specifically for MS patients, perhaps one in your area does as well?

Try yoga for stretching and relaxing.  I have had great luck with TaiChi class to improve my balance.  If you can't find local classes you can purchase dvd's online with excellent instruction.  Google TaiChi for MS and you will see several sources.  

You say your MS Doctor is not happy with how you are doing - have there been recomendations made of modifications to the type of PT and OT you have right now?  Perhaps you need different exercises and practices than you currently have.  

Please don't allow yourself to believe that what you have lost is gone forever.  You didn't get this way overnight and regaining some of it might not happen instantaneously but could still be possible.  

Start slow, but start now.  
Lulu

[LATW]

Thank you. I will see my MS doctor again next month. I see him every 2-3 months depending on how I am doing.

LA