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MS Gets on my Nerves … Literally

Exercise, exercise, exercise … Avoid stress. Very wise words, but then have you ever tried to stay calm while you explain to the person at the pharmacy on your way home from the gym just why you can’t remember your own birthdate? All part of fatigue and cognitive confusion from MS.



Which Came First, the MS or the Stress?

I just finished using my newly acquired Power of Attorney to put my father’s affairs in order and get him into an assisted living facility that is far below the standards that I would have preferred … But it was unfortunately all that he could afford. I spent hours getting the run around from the VA office only to find out that he was actually too healthy for one type of assistance, and too poor for another, even though he served his country in the Korean War. (Not to mention the 15 – 20 month backlog in all the paperwork that the VA is trying to deal with right now.)

Call me human, but despite knowing that getting stressed would not be good for me, my back pain and numbness down my left arm let me know that my MS was already beginning to act up. So what’s a person suppose to do other than stop living? Intellectually, I naturally know that stress isn’t good for me, and yes, I swim, do yoga, and meditate … But sometimes life’s challenges just sneak up and cause my body to tense up no matter how calmly and spiritually I attempt to live my life.

As the article sited below states, “Overall, the evidence is quite congruent and clear. Stress plays a major role in MS relapses and strategies need to be developed to minimise the effects of stressful life events. Meditation is particularly helpful, but many people also find exercise helps in minimizing the effects of stress. Counseling may also be useful.”

Okay, My brain knows this. Now how do I tell it to tight muscles and misfiring nerves? MS/Stress/


The Nightmare that is SSDI

Getting disability can be a nightmare! So many abuse the system, yet those of us with the “but you look so good” chronic diseases often get denied time and time again.
I was denied here in NY. I had to use a disability lawyer and give up 20% of my back pay, and adding salt to the wound, I had to pay $500 to my neurologist for a letter stating my disability. The letter had numerous errors which I had to go over with his office manager despite my failing eyesight and cognitive impairment. Yet, stress as we know, is not good for people that suffer from MS!

Squeaky Wheels – from the National MS Society blog



Not All Good News

Always new warnings with all things that seem good. Tecfidera is the new MS drug that I’m planning to switch to very soon, and the article link below is the latest warning out of Germany. As we all know, no drug comes without its warnings of possible side effects.


My Decision

I’m switching from Avonex to Tecfidera because I’m afraid that staying on no MS disease modifying drug is too much like playing Russian Roulette.

Tecfidera has joined Aubagio (teriflunomide) and Gilenya (fingolimod) to become the third oral disease-modifying therapy for MS available in the US.

It has been around for many years abroad as a treatment for psoriasis, also an autoimmune disease. The most common side effects from Tecfidera are flushing and gastrointestinal events, such as diarrhea, nausea and abdominal pain. These occurred in up to 60% of patients, however they were usually pretty mild and only lasted a couple of weeks.

Compared to placebo, Tecfidera reduced the risk of relapsing (over 2 years) by about 50%, whereas Copaxone only reduced the risk by 29%.There was a 21-38% reduction in risk of disability progression over two years in people on Tecfidera, whereas Copaxone users only had a 7% reduction in risk of disability progression.


My Mid MS Crisis


I never thought that I’d reach this crossroad in my life. At least not after years of preaching to others how important it is to stay on one of the disease modifying meds for MS. After all, I was one of the fortunate ones that was diagnosed in 2001 just after many of these drugs had become available. I didn’t have to just sit by and wait for my MS to progress. I had the power to take control.

Okay then, after over 10 years of choosing to subject my body to a weekly injection of Avonex, an interferon with side effects, I was fortunate enough to get away with minimum side effects and very little disease progression. However, I’ve now reached my mid MS crisis, as I like to call it. My body has suddenly begun to react with the dreaded flu-like symptoms – big time. I tried switching to Tysabri, the monthly IV infusion that has worked well for many others, only resulting in a disaster for me. I wound up with severe joint pain that side lined me for months.

So, my dilemma is what to do now. None of us with multiple sclerosis really know if any of these disease modifying drugs are really working for us other than the lucky few that actually improve while using them. All we have to go by is the statistical evidence, but I’m not a statistic – never have been. My body has always marched to the beat of a different drummer.

When the side effects of the medication become worse than the symptoms of the chronic illness, do we continue the meds because statistically others have benefitted, or do we listen to our own bodies and go off the offending medications. It’s much like playing Russian roulette. I’m not in favor of gambling with my life, but I’m also not very happy with such a lack in the quality of my life due to drugs that I’m not even sure are doing me any good at all. Perhaps my MS would have progressed at the same rate without these drugs in my system. I’m afraid that there’s only one way to find out. What do you think?


Relapsing Multiple Sclerosis Patients Can Look to Second Oral Agent

The recent approval of Aubagio (teriflunomide) provides an opportunity to conduct head-to-head trials in this expanding treatment category

Have you found the drug side effects to sometimes be worse than the MS symptoms we are trying to prevent?

Relapsing Multiple Sclerosis Patients Can Look to Second Oral Agent Multiple Sclerosis Patients Can Look to Second Oral Agent


Exercise and MS

That’s me swimming in the video. I swim 3 times a week. It has worked wonders for my mental and physical health. I’ve dropped 80 pounds, and the water keeps my body temperature down. I also take Aquafit classes which tone individual muscles without over stressing joints.

I’m in better shape in my 50’s with MS than I was in my 20’s! I just require a little more rest in between work outs. :0)


Walk MS: Long Island 2013 presented by Zwanger-Pesiri Radiology: Sheryl Skutelsky – National MS Society

Support Walk MS … Fix MS Now will be participating in the 2013 MS Pooch Parade.

Walk MS: Long Island 2013 presented by Zwanger-Pesiri Radiology: Sheryl Skutelsky – National MS Society.

A Delicate Balance


I was invited to dinner by a friend that I met when our daughters were in preschool together some 30+ years ago. At first I was so excited to see her since we hadn’t gotten together in years. However, the MS dilemma quickly reared its ugly head.

You see, I’m always having to rob Peter to pay Paul … And I’m not talking about money here – I’m talking about energy. People living with MS like myself often need to play the balance game just to enjoy a night out, and forget about the price we pay for a spur of the moment adventure.

Picture my energy supply for the week as a bunch of blocks. I require a matching block of rest for each energy block that I use due to the overwhelming fatigue my body suffers from the effects of multiple sclerosis. Some weeks I just can’t help but tip the scale in the wrong direction.

Unlike healthy people, I have to think ahead and carefully make a game plan if I want to … let’s say … exercise, write my blog, and go out to dinner with a friend because I pay the price if I forget that I also need enough hours in the week to also rest. Otherwise, I can end up spending several days in bed. Kind of zaps some of the fun out of accepting a simple dinner invitation, wouldn’t you say?


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