My Life With MS

2009-05-01T07:34:00.000-07:00

A Look at the Upcoming Multiple Sclerosis Medicines

There are three oral drugs that should come out first for Multiple Sclerosis. While these MS drugs will be a welcome alternative to the injectibles currently available to treat Multiple Sclerosis, we are still a ways away from a cure for MS.

Fingolimod - FTY720
- oral
- in phase III trials
- reduces relapse rate by over 50%
- 2% of patients showed serious adverse side effects including heart and liver problems
- may repair or reduce damage

Cladribine
- oral
- reduces brain lesions and disability progression
- reduces relapse rate by just under 60%
- side effects reducing white blood cells (which increases infection susceptibility) and higher incidence of cancer

Fampridine-SR
- oral, similar in function to 4ap
- improves walking ability
- well-tolerated with few side effects

It is very exciting that so many (over 10) are on the near horizon for treating multiple sclerosis. It is unfortunate that the first three that should be released don't do all that much more than current disease-modifying MS drugs -- other than the fact that they are oral (which is always good).

Alternative to 4-amino pyridine

2009-03-25T05:01:00.000-07:00

Amantadine instead of 4-amino pyridine

Recently my doctor suggested I try Amantadine instead of 4ap (which I had been using for 3 years) to battle the fatigue associated with multiple sclerosis. I have a new neurologist who has quite a bit of knowledge of multiple sclerosis - because of this I tried the new drug. Here is what I found:

advantages of 4ap: few negative side effects; gently gives me noticeable energy

disadvantages of 4ap: costs $59 each month

advantages of amantadine: costs $10 per month

disadvantages of amantadine: lots of side effects, made me feel almost caffeine jolted, seemed to stop being effective after just a few hours

Overall, I really disliked everything about the amantadine (other than the price, of course) to help make my multiple sclerosis easier. It was really awful and the side effects really scared me. Of course, I gratefully went back to 4ap and now the MS is manageable!!

2009-02-11T08:03:00.000-08:00

Multiple Sclerosis and Colds/Flu

I learned a very interesting tidbit about having multiple sclerosis and getting sick with a bad cold. For the first time in a long time, I consistently had a fever across several days. I didn't even need to check my temperature to know I had a fever -- I just had to survey my multiple sclerosis symptoms.

The higher my fever and the longer I had it, the worse my symptoms were. When my fever was bad continuously, I could barely put my foot in front of the other. I have never experienced this. On my occasions throughout last week, I had to rely on my husband's assistance or a wheeled desk chair to help me to and from the bathroom. It was very scary and very dramatic for me. My MS symptoms went from bad to worse in a blink of an eye.

Of course, now that I don't have a cold or a fever, I am fine. However, now I fully understand why I don't want to be around sick people and why I need to be very apprehensive about being sick because I do have multiple sclerosis.

2009-01-13T07:22:00.000-08:00

Chemo and Multiple Sclerosis

I had my first round of chemo for Multiple Sclerosis in lieu of disease-modifying shots (in my case, Rebif). I am very excited about treating my MS with chemotherapy because:

- No more shots three times per week (which means no more feeling awful the next day and my body will have a chance to heal from all of the bruises)
- Chemo is only once every three months
- Chemo provides a greater opportunity to repair prior damage from Multiple Sclerosis

The day I had chemo I was walking on water (partially because I had some steroids at the same time). The next two days were not so great. I only experienced partial nausea so it was bearable. We'll have to see how the next 10 days go. It would be great to not have problems with my white blood cell counts and not lose my hair.

There is no doubt that chemo is a much stronger way to treat my Multiple Sclerosis but I am believing that is just the thing I need to positively impact my disease progression.

2008-12-12T06:24:00.000-08:00

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.

2008-11-03T07:05:00.000-08:00

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

2008-09-18T07:34:00.001-07:00

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.

2008-08-27T16:45:00.000-07:00

A cooling trick for MS whenever you get overheated...

I live in Texas. This summer we have pretty much had three months of consistently over 95 degree days. This is no good for a person with multiple sclerosis. The hot weather has really stopped me from doing things this year.

But what I am also noticing is that I get overheated throughout the day regardless of whether or not I am in the heat. Again this does not bode well if you have multiple sclerosis. It dramatically reduces my mobility or desire to do things.

I happened on a neat little trick that keeps me shivering so that I am chilly without boosting the air conditioning.

In an effort to be healthy and eliminate some toxins (which are all good things in fighting multiple sclerosis), I started drinking more vegetable fruit juice (I mix 85% vegetable juice with about 15% fruit juice). Of course, this made me feel really good and clear-headed when I drank the mixture. These are pure blessings when you have multiple sclerosis.

But what I also noticed is that I started feeling really cold -- in the middle of summer in Texas. Now, every morning I drink the juice with my fiber and probiotics and the days are so much easier on my body. Apparently this has to do with your body not generating so much heat to digest the food you eat. That is also why I won't be able to juice in the winter -- I'll get too cold.

I hope this helps you stay cool...

2008-08-03T17:01:00.001-07:00

Multiple Sclerosis, Shots and Aleve...

I have been experiencing some crazy symptoms recently after taking my multiple sclerosis disease modifying shot Rebif. As if I didn't have enough to deal with by having multiple sclerosis...now I am experiencing the following challenges 3 days of every week following my shot:

- greater head/mind fuzziness the next first half of the day
- more walking struggles
- cold/flu-like symptoms

I go through this three times every week. I was taking Aleve to offset this just prior to taking my shot but Aleve is toxic to your body and with multiple sclerosis my body is already toxic. I stopped taking Aleve and started taking Ginger Root and that has really helped. Ginger root is a natural anti-inflammatory. Hopefully, this will solve the problem on a long-term basis.

2008-08-03T14:48:00.000-07:00

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!

2008-06-05T16:47:00.001-07:00

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.

2008-05-05T06:27:00.000-07:00

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!!!

2008-04-02T17:59:00.000-07:00

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!!

2008-03-03T13:28:00.000-08:00

New Drugs and Multiple Sclerosis

I have been in an uproar lately over:

- the enormous amount of time it is taking to get new drugs to market for multiple sclerosis
- participating in a drug trial often means giving up your current disease-modifying drug
- the lack of attention and focus in comparing the new drug to existing MS drugs in patients
- what I am calling carelessness on the drug companies behalf in using very limited MRI reports to evaluate the success of a drug

It could be that I am just now giving some attention to the drug research being done for multiple sclerosis or it could be that I am justifiably upset. Take rituximab, for example. During the testing they looked at 3 months of MRIs to evaluate its effect on MS patients. Twelve weeks is nothing in the life of disease progression!!

Plus, I am very concerned about side effects from this cancer drug. As we know, it takes a very intense drug to go up against cancer and so many of them have really strong side effects. I would be curious to see what types of side effects this drug has in cancer patients and multiple sclerosis clients.

I just want to say to the drug companies -- "we are rather intelligent, you know, what are you trying to slip by us?"

2008-02-04T07:06:00.000-08:00

Better Walking Despite Your Multiple Sclerosis

My dear friend Mo found this wonderful tool to help her walk better. She has a bit of a dropped foot and she was wearing an orthotic to help her keep her foot up when she was walking (so she wouldn't trip over her foot). The bad thing about such a brace is that it discourages muscle growth and really makes your leg worse. This further decreases your mobility and worsens this sympton of multiple sclerosis.

In looking for other devices she found the Walk Aid and the Bioness L300. The beauty of the Bioness L300 seemed to be that you could control it better (ensuring that it is placed right for optimum function) and it actually helped strengthen your leg to help you get some of your gait ease back. This is amazing news for people with multiple sclerosis who often have walking/gait challenges.

The Bioness L300 is composed of a cuff that fits securely below your knee as well as a small reciever unit that connects to your shoe but transmits to the knee cuff. The unit sends signals to the cuff to communicate foot action and lift. The cuff communicates back with each stop to tell the reciever unit how much to stimulate your foot to lift up based on the immediate gait information.

The L300 is really an amazing tool particularly for those who exhaust so much energy focusing on their walking so that it is smooth and they don't fall. It is particularly beneficial for stroke victims and those with multiple sclerosis do to the type of damage existing in the body.

The bad news is that the L300 is in the process of being approved (for payment through Medicare) and since this is not final yet, it is fairly cumbersome to get it approved through your insurance. However, this device is so powerful for someone with gait challenges from multiple sclerosis that it warrants a little hard work!

2008-01-04T08:19:00.000-08:00

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 Medications and Supplements

2007-12-05T12:43:00.000-08:00

What do you take to help you with your Multiple Sclerosis??

I thought that I would share the medications and supplements I take that I do so because of my multiple sclerosis.

4-Amino Pyridine - 10 mg 3X per day -- It gives me energy and helps me walk better
Baclofen - 10 mg -- Decreases spasms, pain and stiffness related to multiple sclerosis
Provigil - 50 mg -- Helps clear my head so I am not fuzzy

Milk Thistle - 150 mg -- Protects liver function as taking the shots may impede liver function
Omega 3-6-9 -- Fish oils necessary to promote cell repair
Calcium and Vitamin D -- Helps maintain healthy immune system and supports cell growth
Ginkgo Biloba - 120 mg -- Supports memory and circulation
Actetyl L-Carnitine 500 mg/Alpha-Lipoic Acid 200 mg -- Dr. Elliott Dr. Frohman says to take
Multivitamin w/100% only of A, C, E -- Necessary to sustain/maintain many functions
B-12 as needed -- For energy

These medications and supplements help to keep me in my best shape to deal with everything that gets thrown at me from this crazy disease. Multiple Sclerosis makes it sometimes difficult to deal with the mobility issues and energy drains. I am very open to anything that is not medication to help me feel better!

2007-11-22T17:50:00.000-08:00

MS -- Find Your Own Way

It occurs to me that after almost 10 years with multiple sclerosis -- you have to find your own way with how you treat the disease. You have to decide what treatments will work best for you and what you are willing to accept with the impact of multiple sclerosis and your life.

You have to choose:
- to use an injectible or not
- what other accompanying medicines you are willing to put in your body (are the side effects worth it)
- if you are going to subscribe to the theory that vitamins are better for you and which ones are safe to take
- which actions are going to make living with multiple sclerosis everyday more tolerable
- and what you are going to do to help someone else who is struggling with multiple sclerosis

I truly believe that helping other people helps you deal with things in your own life. If it makes your toleration of multiple sclerosis even just a bit better, isn't it worth it?

2007-10-24T05:38:00.000-07:00

Making Sense of Medicare Part D – Drug Plan Formularies
by Jeremy Cockerill

(I loved this article so I thought I'd share it)

One of the most difficult portions of the new Medicare Prescription Drug Plan to navigate is the various drug plans’ formularies. Selection of a plan is based on what drugs you are on and which plans provide the best coverage for your selected drugs. In order to select the optimal plan for themselves, it is critical that Medicare-eligible individuals understand how these formularies work.

What exactly is a formulary?

A formulary is a list of “covered” prescription drugs that the various Medicare prescription drug plans must provide to their enrollees. Some plans restrict prescriptions to those contained on the formulary and others may also provide non-formulary prescriptions depending on the level of coverage selected by the beneficiary. Drugs contained on the formulary are generally those that are determined to be cost effective and medically effective. However, because of the ability of the insurance providers to negotiate their own “deals” with the drug companies under Medicare Part D, without having to pass the savings on to the consumer, formularies often contain the drugs that these insurance companies are able to negotiate the best pricing on.

Basically, the insurance providers that operate the various plans have a Pharmacy & Therapeutics committee that chooses which drugs they will cover on their formulary and which drugs they will not cover. There is a national formulary coverage standard that the insurance providers must follow when creating their formulary under the new Medicare Prescription Drug Plan. They must provide a certain standard level of drug coverage for particular disease/health condition categories. This means that these plans must cover a certain number of drugs in most disease categories which effect seniors’ health. The big mystery for Medicare-eligible individuals to figure out is, will these plans cover the drugs that they have been prescribed by their physician and that they have been taking for some time.

There is one important catch with Medicare Part D that Medicare beneficiaries must be aware of. Once a Medicare Part D beneficiary chooses a plan they are “locked in” to that plan for the year. Now, even though the beneficiary has done all the research to choose the right plan that covers all of their drugs the insurance companies have the ability to switch which drugs are covered under their formulary (with a 60 day warning period).

Now that we know what a formulary is, the next question to ask is “what are the “Tiers” that some of the various plans have in their formularies?”

Most plans that have tiers will have three tiers.

Within a three-tiered formulary, prescription drug products are categorized as Tier 1, Tier 2 or Tier 3. Each Tier is assigned a specific co-payment amount.

What is a co-payment?

A co-payment is a cost-sharing arrangement under which a beneficiary pays a specified dollar amount for a prescription drug. Basically, a co-payment is a fix amount that a beneficiary must pay for each 30-day supply of a drug they buy within a specified Tier.

Tier 1 is the lowest co-payment level and usually contains generic drugs.

Tier 2 is the mid-range co-payment level and usually contains “Preferred” brand name medications.

Tier 3 is the highest co-payment level and usually contains newer, more innovative and expensive brand name medications. There are often specific clinical restrictions established within a plans formulary for a beneficiary to receive these Tier 3 medications (some Tier 2 drugs may also have these restrictions). These restrictions include Quantity Limits, Prior Authorizations and Step Therapy.

What are Quantity Limits (QL), Prior Authorization (PA) and Step Therapy (ST)?

Quantity Limit (QL) means that the insurance company will only pay for a set amount of a particular drug within a given time frame. For example, 10 tablets within a 30 day period. If you want more than that set quantity you are responsible to pay for the product. A good example of where a quantity limit is often implemented is with migraine medications. Exceptions to established quantity or days supply limits may be made if the prescribing physician is able to justify medical necessity.

Prior Authorization is the process of obtaining coverage approval for a particular medication. Without such prior authorization, the medication is not covered. Authorizations are normally issued by nurse reviewers or other authorized personnel at the insurance company who review the doctor's orders and other documentation to ensure that the medication is medically necessary. A set standard or protocol is used to determine whether the medication will be approved or not.

Step Therapy is defined as the practice of beginning drug therapy for a medical condition with the most cost-effective and safest drug therapy and progressing to other more costly or risky therapy, only if necessary. The aims are to control costs and minimize risks. Step Therapy is also called step protocol. Step Therapy may require the beneficiary to use a "first-line" drug before authorization is granted for a more costly "second-line" drug. For example, an individual may be required to try generic ibuprofen as a “first line” drug for arthritis pain before they will be given brand name Celebrex as a “second line” drug.

Due to the complicated formularies within many Medicare Part D plans, it is important that participants in Medicare Part D let their physician know which plan they have signed up for. This way the individual’s physician can work within the constraints of the formulary in order to ensure that the beneficiary gets the best and most appropriate therapy that is covered under their plan.

Medicare Part D individuals should also be aware that purchasing medications, which are not covered under their plan’s formulary, from a licensed Canadian pharmacy, is an excellent alternative to paying the local U.S. pharmacy price. Many individuals will also benefit greatly by ordering their medications from a Canadian pharmacy once they have reached the gap in coverage, called the “doughnut hole”. This gap in coverage occurs at the $2250 annual drug expenditure level and beneficiaries are 100% responsible for their drug costs until they reach $5100 in drug expenditures. For a surprisingly high number of individuals, they may save more by ordering all of their medications from Canada rather than purchasing them through the Medicare program.

Medicare Part D beneficiaries must understand how their plan’s formulary works and they also need to keep up to date with any notices of changes to their plan’s formulary. Without keeping up to date they may find themselves in a position in which they are unable to get their medication the next time they walk into their pharmacy. With the preceding information a Medicare beneficiary will be better equipped to choose a plan that is best for them. Medicare Part D coverage combined with Canadian pharmacy savings can provide seniors with incredible savings. These individuals should be able to save a lot of money.

2007-09-24T06:18:00.000-07:00

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!!!

2007-08-27T13:25:00.000-07:00

Multiple Sclerosis and MRIs (again!)

I had an interesting experience the other day. I finally had an MRI of my head, neck and spine. I don’t really believe in MRIs for multiple sclerosis past the diagnosis. I heard a great lecture by a neurologist in the Dallas area who said for a number of reasons, MRIs may not be beneficial in ongoing treatment for multiple sclerosis:

- if you have MRIs on multiple machines, you are comparing apples to plums rather than comparing disease activity between different points in time
- MRIs may not be indicative of disease activity so you may have lots of lesions or spots but function fine and vice versa
- So you have more lesions and you have more functionality problems – this does not lead to any different treatment so why spend the money and have the MRI

However, I had an MRI a couple of weeks ago because I have good insurance and I had not had one for a couple of years. I thought my neurologist would probably enjoy it so I did it.

To my surprise the neurologist said no disease activity. Of course, I thought this was good but then I had to fall back on my beliefs that after diagnosis, the MRI really doesn’t mean much – no matter if it is good or bad news.

Toxins, Candida and Multiple Sclerosis

2007-07-26T12:22:00.000-07:00

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.

2007-06-21T13:41:00.000-07:00

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!

2007-05-23T12:48:00.001-07:00

Multiple Sclerosis and Inflammatory Foods

Did you know you could be making your multiple sclerosis worse by the things you eat? Multiple sclerosis is an inflammatory disease meaning the body attacks itself. This can show itself by making it more difficult for you to do things (walking, talking, thinking, being alert, etc.). The foods you eat either contribute to inflammation or minimize the inflammation in your body. Inflammation is worsened when you eat inflammatory foods like:

- trans fats (including partially hydrogenated oil)
- harmful saturated fats
- white flour
- white sugar
- processed foods
- high fructose corn syrup
- fruits and vegetables with high pesticide contents

These foods should help decrease the severity of disease symptoms by fighting inflammation (including the fatigue we all feel with multiple sclerosis):

- walnuts and other nuts
- whole foods
- whole grains
- fatty fish
- organic food and produce

Isn't it worth it to at least test this idea with your multiple sclerosis? What do you have to lose? Better overall health?

Multiple Sclerosis and Prescription Drug Coverage

2007-05-01T15:27:00.000-07:00

Multiple Sclerosis and Prescription Drug Coverage

I am in awe at all the non-illness related problems associated with having multiple sclerosis.

1) there is the chronic disease part of having multiple sclerosis
2) there are the nasty shots and other drugs that all have side effects
3) there is the unexpected nature of multiple sclerosis where you never know what is going to happen
4) there is the part where you become unreliable because of the unpredictability of the disease

But now there is the lack of good quality prescription coverage if you are on disability, can not work or do not have spouse prescription drug coverage. I do Medicare Part D counseling on behalf of the National Multiple Sclerosis Society and I see the awful horrors all of the time. You can pretty much bet that your out of pocket costs with Part D are going to be between $4500 and $5500 annually if you have multiple sclerosis.

That is not necessarily spread across all months equally. How are people who can't work due to disability expected to fork over $5000 in prescription drug costs alone, when they have multiple sclerosis? It ceases to amaze me.