Multiple Sclerosis and the Bioness L300

I am thrilled to know that I am using my L300 more to help with the foot drop caused by multiple sclerosis. It is great to know that I have this "crutch" when I am tired or not feeling up to par. This is so important as you never know how you are going to feel one day to the next with multiple sclerosis.

However, I must share what a friend shared with me last night. She has what is believed to be severe burns on her leg from the sensors of her L300. She got the Bioness almost 7 months ago, and like most with MS, she depends on her L300 leg cuff heavily. The burns just started in the last several weeks.

Of course, minimizing and eliminating the burns is important but what is a huge concern to my friend is Bioness has not presented a solution to this problem and, of course, my friend can not wear the device (which greatly assists her walking challenges with multiple sclerosis) until her skin heals.

Multiple Sclerosis -- Tysabri vs. Novantrone

I am wanting to get off of my Rebif shots -- the disease-modifying drug for MS. Rebif is a great drug but I just dread the shots terribly (who wouldn't?). However, I know that I need to be taking something for my MS. The other challenge that I am experiencing is that I now get pretty bad cold and flu symptoms after my shot. It is as if all of the sudden my shots are not working in harmony with my body.

My neurologist recently suggested I start on Novantrone as he has many patients that are successfully taking this instead of disease-modifying shots for the multiple sclerosis. Meanwhile I have a dear friend who is on Tysabri who swears by this MS drug. So I thought I would do a quick pro and con list for Novantrone vs. Tysabri.

Novantrone Pros:
- you take an IV once every three months
- it suppresses the activity on B cells, T cells and macrophages which lead to attacks on the myelin
- one of the only drugs for worsening relapse-remitting MS as well as more aggressive forms

Novantrone Cons:
- it is a cancer drug and therefore has some of the well known side effects.

Tysabri Pros:
- does not carry the intense/strong side effects of a cancer treatment
- equally great positive impact on current and longer term MS symptons

Tysabri Cons:
- it is a monthly infusion
- you can't take steroids with it
- my current doctor and my previous doctor would not prescribe it

Multiple Sclerosis and Novantrone

I went to a new neurologist recently for my MS. I am currently taking Rebif and I have been for three years to help with the multiple sclerosis. I asked the doctor if I should be doing anything different and what are other people similar to me doing to treat their multiple sclerosis.

He said that he has a lot of patients on Novantrone which is a chemotherapy drug used to treat cancer. The dosage is significantly smaller for multiple sclerosis patients and therefore so are the side effects. It is also the only drug that has been approved by the FDA to treat secondary progressive forms of multiple sclerosis.

I thought it was great that my new doctor suggested I look up info on Novantrone and consult a cancer doctor for their perspective (since these doctors work so much closer with the chemotherapy drugs).

I am not sure what I think yet about this drug but I am eagerly exploring it -- it may be an option for me.

Multiple Sclerosis, Coconut Oil and Cooking!!

I have multiple sclerosis and have been reading a lot of books targeting healthy lifestyles for people with chronic diseases like multiple sclerosis. It is very interesting to me how much food plays a role in your general functionality - your daily activities as well as your internal bodily functions and toxicity.

I am equally amazed at home much coconut oil has come up in my reading. I have read several books lately that deal with the impacts of multiple sclerosis on a holistic level and they all discuss coconut oil. It is great to be validated in your thinking -- especially when you believe something like coconut oil is a health elixir yet the general population and the medical community think of it as snake oil!!!

I appreciate a medical professional's opinion when they don't immediately try to solve all problems with a prescription. I really appreciate someone who wants use common things that don't cost much to treat health challenges.

I did something I have been meaning to do for a while. I bought coconut flour to bake with. It is a healthy flour that contains no wheat gluten (often a huge allergen for people with multiple sclerosis) and is high in fiber. I am learning that when you bake and want to substitute regular flour in recipes, you have to combine alternative flours. I bought coconut flour and brown rice flour and I am going to see how it works in chocolate chip cookies, etc.

I'd like to think that changing up what I put in my body will help me in my everyday living with multiple sclerosis!

Multiple Sclerosis and Juice Detoxification

I have been reading a couple of books and visiting a couple of web sites at the urging of my Acupuncturist while she treats my multiple sclerosis. I am learning all kinds of information on the power of juice fasting and how it can help those of us with autoimmune diseases like MS.

Many believe that people with multiple sclerosis can benefit from juicing by:
-- cleaning out the built up toxins in the blood
-- restoring proper function to various organs throughout the body
-- gaining energy and mental clarity (two things that give people with MS trouble)
-- cleaning out the bowel thoroughly
-- improving walking, balance and mobility by ridding the body of toxins

Not only does juicing do all this, but it also helps you lose weight and feel better while potentially minimizing your need for some prescription drugs.

From what I understand, it is best to drink primarily vegetable juice and minimize the sugary fruit juice content. I just did this for a few days and I was shocked at how much it helped me think clearly, feel energized and walk better. I mixed all juice with equal amounts of water and made sure to take something like Smooth Move -- a tea that facilitates bowel elimination everyday.

What I experienced was well worth not eating solid food for a few days. I plan to do this one day a week for quite some time to continue to improve what I experience with my multiple sclerosis.

Multiple Sclerosis Exacerbations

I never know if I am for sure having one of the exacerbations related to my multiple sclerosis or if it is just a few bad days. I can never firmly isolate the situation.

The challenge is if I am having an exacerbation, then I need to take steroids. If I am not, I don't want to take the steroids. However, if you don't knock out an MS exacerbation with steroids, there is potential that whatever is happening temporarily may become permanent. I am constantly challenged with this issue as I don't want the side effects of steroids if I don't need them and I don't want to put any unnecessary medicine in my body.

I am in this situation right now and I am having such a difficult time -- both with my MS and with the decision of whether or not to take the steroids. My doctor has prescribed a pretty intense dose of steroids that would knock anything out but they may also help me gain weight (already a problem). I also continually fear that my body will get used to a medicine and the medicine will eventually become less effective. What to do!

Multiple Sclerosis is a very interesting disease that constantly forces me to think about treatments, daily activities/mobility and everything in between!!!

Multiple Sclerosis and the Bioness L300

I have had MS for many years and have walking/balance problems. My friend Mo got the Bioness L300 several months ago and she believes it has made a big difference in her multiple sclerosis related gait problems. I bit the bullet and got one, too. Granted many insurance companies do not cover this device and it costs $5900. However, it works by stimulating the muscle on the front of your leg below your knee. This stimulation, in turn, forces your toes/forefoot to automatically pop up. This prevents the dropped foot so prevalent in many with multiple sclerosis.

Here are my initial pluses and minuses for the L300 as it relates to me and my experiences with multiple sclerosis:

Pros
- it does help me walk better
- I do not get as fatigued as I don't have to concentrate so hard on walking
- Bioness will work very hard to get this device for you

Cons
- it has a pretty big leg cuff and I think very few of my pants will fit over the L300
- it takes a little time to get used to the stimulation component
- it takes a little practice to get the electrodes in the right place so it is working correctly to pop you foot up
- not a lot of therapists are acclimated with the L300
- it is quite a little drama to get approved by insurance, even if to pay for it partially

Most importantly, the L300 gives us all hope that there is some help for those of us with multiple sclerosis. That is the best pro of all!!

Multiple Sclerosis and Provigil

I went to a self help group for the National Multiple Sclerosis Society where we all discussed the various medications and supplements we were taking to manage multiple sclerosis.

One of the attendees indicated (after a recent visit to well-known Dr. Elliott Frohman) that was going to:

- quit taking Provigil
- start doubling up on her Acetyl L-Carnitine/Alpha-Lipoic Acid combo from Bronson Laboratories

I found this be a very interesting way to deal with multiple sclerosis. Provigil is one of my must-have medications because it helps my think clearer and have more energy. However, Provigil is a drug -- most all drugs have side effects. Plus, Provigil is costly. Everything surrounding multiple sclerosis medications seems to be expensive and I don't need another negative side effect.

The best news is that since I have heard this suggestion, I have stopped taking Provigil and ramped up on ALC/ALA. It seems to be working - I am functioning fine. I may even be doing better in terms of mobility and mental clarity!

Multiple Sclerosis and yet another drug!

I am anti-drug whenever possible. However, there comes a point that I need help and I need to look to pharmaceuticals to help manage the side effects of multiple sclerosis.

I have had a prescription for Provigil for quite some time and I would take a quarter of a pill occasionally. However, I am not a big fan of drugs and when I only want to take what I absolutely need when I have to take them. Up until now, I don't think I understood how Provigil can help how I deal with multiple sclerosis every day.

I have been suffering from (what I call) a foggy brain for quite some time. Sometimes it is worse than others but recently it became everyday. I take 4-amino pyridine daily -- I thought this was for the foggy brain (and mobility and generally feeling good/normal). However, my foggy brain was still present and this is one thing I can not stand with multiple sclerosis.

My fabulous friend Mo reminded me that I had Provigil and that should help clear my mind so I could think better. I have been hesitant to take this drug as others have reported it makes them race a little unnaturally once in their body (think speed). However, I am almost desperate. My fogginess is almost to the point of nausea so I started taking about 50mg daily.

Wow - what a difference!! Multiple sclerosis seems a little more manageable with this drug in my body!!!

Toxins, Candida and Multiple Sclerosis

Toxins, Candida and Multiple Sclerosis

I went to a new doctor recently for my multiple sclerosis. Dr. John Gonino or Gonino Wellness Group is a regular doctor but also one who practices alternative medicine. I was particularly interested in Dr. Gonino because I desire alternative treatments for multiple sclerosis but I do not want to step away from my disease-modifying shots just yet (since that is all we have to treat MS).

I was surprised to learn from the doctor that toxins are often more present in people who have multiple sclerosis. The toxins make it more difficult for people with MS to function (I truly believe that a cold, a headache or anything else is tougher on people who have multiple sclerosis than those who don't have it).

This new doctor indicated to me that before he can treat my multiple sclerosis, I have to clear as many toxins out of my body as possible. He recommended a candida eliminating eating plan for three months, a "push" to push toxins out of my blood stream and a coffee enema to get toxins out of my colon.

Although, this is more difficult than simply taking medicine, I am very excited at the prospect of lessening my MS symptons and maybe solving some of my longer term challenges with multiple sclerosis.

Multiple Sclerosis and the heat!

Is it me or is the heat much worse this year??! I live in Texas and me (and my multiple sclerosis) can barely manage it with the heat this summer. I may have to pull out some of my tricks for making this whole situation more bearable. Here are some of the things I do now as well as what I intend to do in the near future:

- I start the car a couple of minutes before I get in it and lower the windows to let the hot air out
- I may get an automatic starter that will allow me to fully cool the car off before I get to the vehicle
- I may start wearing my cooling bandana (you know the ones with the gel that stay cold)
- I run errands in the morning only
- I swim laps in the health club pool several days a week (this keeps my cooler longer)
- I drink cold tea to wake up rather than hot coffee

Maybe as I get older, the effects of the multiple sclerosis are just harder to bear. Maybe it is just hotter this year in Texas!