A Bit of an Update

Martha · Post by **Martha** » Sat Apr 20, 2013 4:07 pm

Dear Joe,

Wow, that's amazing that you got such fast results with the Mestinon. Congratulations on having something work!

Martha

carolm · Post by **carolm** » Sat Apr 20, 2013 5:18 pm

Hi Joe,
I'm so glad you posted. You and Jenny (and other members associated with Boston/MIT) have been on my mind. It's good to hear from our PP friends in that area of the country.

I just want to offer my best wishes, also wishing I had a magic wand. I'd wave it in your direction first. You do have so much to manage. Please keep in touch. When you are doing well we need to hear from you. When you are struggling you need to hear from us.

Keep battling,
Carol

Joefnh · Post by **Joefnh** » Sat Apr 20, 2013 5:26 pm

Thanks Carol, I work for MIT and I know the securty guard Sean, he often worked near the parking areas on campus, he will be missed. My heart is also very heavy for those in West Texas, dozens dead and thousands affected. No matter how sensational and intense it was this week in Boston, our friends in West, Texas have essentially lost a good chunk of their whole town. It certainly has been an intense week for many.

This does bring into perspective and focus our own personal battles and what they mean when compared to the big picture.

Linda that's one good thing about MG, it can be treated quickly by a single medicine and that med works right away. What's great is there are several other meds that are available as the first one might not work that well over time.

Lesley · Post by **Lesley** » Sat Apr 20, 2013 6:19 pm

NO need to blush, Jim. Getting this from so many means it is the truth, pure and simple. I am SO glad the drug is working so well and so fast. I treated people with AS and with MG, but never with both of them together. I am so glad the MG symptoms are coming under control, so the challenge to your spinal column, and the muscles of your ribcage are decreased.

Playing your guitar - reminds me of the guy who went to the doc with a broken wrist, and while it was being set he asked whether he would be able to play the violin when his wrist healed. The doc said that he would. They guy grinned and said - well that's good, because I couldn't before.
Silly, old, but funny.

Kari -

Last month I got my certification as a yoga teacher

WOW!! What sort of yoga?

Kari · Post by **Kari** » Sat Apr 20, 2013 7:21 pm

Hi Lesley,

The focus was on classical hatha yoga, including an in depth study of Patanjali's yoga sutras. The program ran for over 7 months, so we covered a lot of ground. We learned about so many aspects of the discipline, including breathing techniques, meditation, chanting, deep relaxation (yoga nidra), asanas (postures), and even some Sanskrit. Many yoga teacher programs these days have a narrow focus, teaching only one method of yoga, but this program was very comprehensive. It was a truly enjoyable "growth" experience.

Thanks for your interest Lesley. I know you're struggling with so many physical issues, and pray you'll get some relief so you can do more of the activities you enjoy.

Love,
Kari

Gloria · Post by **Gloria** » Sat Apr 20, 2013 9:35 pm

What encouraging news, Joe! It's amazing that you didn't realize how bad you were feeling until you began to feel better. We truly do adapt to the situation we're given, don't we? Even your eyesight was affected? This sounds like a pretty serious condition. I hope the meds continue to help you.

Gloria

Lesley · Post by **Lesley** » Sat Apr 20, 2013 10:32 pm

Not meaning to hijack this wonderful thread, Joe. Sorry!

Kari - I did hatha yoga for years and then Iyangar yoga for about 6 more. I LOVED it. I was a real junkie. I haven't done it in years. I tried after I got hurt, but found Pilates helped more. Right now I need some form of stretching. I have to figure it out.

Where are you going to teach? Good luck to you!

jgivens · Post by **jgivens** » Sun Apr 21, 2013 5:27 am

Joe,
This indeed, has been a horrendous week news wise. I think we've all had a certain amount of trauma watching the news unfold in both Boston and Texas and it didn't help to have our legislators screw up so royally and ignore the general public's wishes regarding background checks for people wanting to purchase guns.
That said, it does not take away from the individual traumas we face even if they seem minor in comparison to the rest of the world! I am sorry that you continue to add autoimmune diseases to your medical "portfolio", but it sounds like you are in a good place to get help for it. My prayer for you is that you will continue to have good results from this new med you are taking and can find something to control your back pain.

JFR · Post by **JFR** » Sun Apr 21, 2013 6:17 am

Joe,

So glad the medicine is so helpful. I remember years ago (decades ago I think) reading an article in the New Yorker about a woman with Myasthenia Gravis who went misdiagnosed for years, told her problem was psychiatric, had to quit her job and move in with her parents, until she got the drug and was immediately better. It must have been a pretty powerful article because it stuck with me all these years while I have trouble remembering the library book I read last week. Also glad you continue to enjoy the lamb burgers and kale chips. After I invited you for lunch I worried that my simple fare was a little too basic for company but simple single ingredient food was what I was eating then and am still eating now. I was relieved that you enjoyed it. Maybe we can get together again this summer (or spring).

Hoping for better days for you. Enough is enough.

love,
Jean

Joefnh · Post by **Joefnh** » Sun Apr 21, 2013 7:22 am

It has been interesting how many areas have improved that I did not know were having a problem. The one I notice more after I take each dose is how breathing is so much easier, I would have never said it was a problem before. Like the breathing, not only is the double vision gone, but my general eyesight is so much better. I was also able to lift my leg up to tie my shoe without me grabbing the leg with my hand. All I can say this weekend is WOW

Jean actually I am eating very simple on the low carb diet and enjoying it thoroughly, I still need to write a post about that experience. I did enjoy the lunch you made quite a bit, I had never had lamb patties before, I love lamb and those were great as was the kale chips

You know the various sites on MG are full of stories about patients being sent to a psychiatrist and then when they do finally get the right help and meds they instantly feel better, most with MG have a very quick response to Mestinon. One of the problems is awareness, as this is a fairly rare disease with a prevalence of about 12 out of 100,000 (male and female).

For a very good example of this read Glenda's Story at the top of this page...this one infuriated me:

Note in Australia "Doctors Surgery" means Doctors Office....not sure why, maybe Gabes or Bifficus comment on that.

http://www.myasthenia.org.au/html/experiences.htm

Kari · Post by **Kari** » Sun Apr 21, 2013 8:37 am

Joe - can't begin to tell you how heart-warming it is to read your last couple of posts. It's making me rethink my negative attitude towards western medicine!!! I sure hope the med keeps working for a long time, so you can build up muscle tissue. Then, as you say, there are plenty of other meds that can also help - yeah!!!

On another note, I have been watching a British TV series called "Doc Martin". It revolves around a surgeon from London who develops a phobia about blood; so he quits his job and moves to a small coastal town to be their town doctor. All that said, his office is referred to as "The Surgery" - it took me quite a while to get used to that :).

Lesley - interesting you mention Iyengar as I'm about half way through one of his books "Light on Life" - he is a very inspirational person. I'm not sure yet where I'm headed with the teaching. I might start a class in my home studio for friends in the neighborhood.

Love,
Kari

Stanz · Post by **Stanz** » Sun Apr 21, 2013 10:17 am

Hi Joe,

Got a message from Joan yesterday about your recent developments and have read through all of this and gone through quite the range of emotions. Obviously you are very dear and special to all of us here and I am so happy that the medication is working so well for you.

One of my favorite quotes:

ATTITUDE by: Charles Swindoll

The longer I live, the more I realize the impact of attitude on life.

Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company... a church... a home.

The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past... we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude... I am convinced that life is 10% what happens to me and 90% how I react to it.

And so it is with you... we are in charge of our attitudes.

Love you, my friend.

Connie

Leah · Post by **Leah** » Sun Apr 21, 2013 10:35 am

It's wonderful that this med. has made you feel so good... and so fast! Thanks for the update :)
Leah

Zizzle · Post by **Zizzle** » Mon Apr 22, 2013 9:18 am

Wow, Joe, it's amazing that one medicine could make you feel so much better so quickly!! I hope it's something you can use long-term with continued imrpovement and few side effects.

This made me laugh:

While driving home I noticed that my vision was improving rapidly, the double vision had disappeared and my focus was sharper that it had been in quite a while.

What are you doing driving around with double-vision?!?

Joefnh · Post by **Joefnh** » Mon Apr 22, 2013 9:43 am

Zizzle said:

What are you doing driving around with double-vision?!?

Good heavens....I thought that would be obvious to everyone....getting twice as much done!!

Actually my double vision was when looking slightly off axis at about 20 degrees to either side (looking to the side without turning your head), when looking straight ahead the main issue was the changing function with my eyes focusing.

MG is known to affect the muscles that control the tracking movements and focus mechanism of the eyes. These muscles never rest and are very susceptible to the muscle degradation in strength MG causes.

Actually one of the diagnostic tests they give you to help Dx MG, is to give you an IV medicine called Tensilon which is a short acting version of Mestinon which I take in pill form. If you get immediate relief, MG is a likely diagnosis.

It works the same with the pills, you get immediate benefit (once they absorb) and once they wear off (in seemingly exactly 4 hours) your symptoms return. There is a timed release version that you can switch to once your dosage has stabilized.

As far as the long term benefit, most can use this med for years and years but with increasing dosages. It's also good to note this med just covers up or compensates for the real disease which is destroying the nerve signal receptors on the muscles which normally would recieve the signal form the nerve ending. It does this by artificially raising the level of the natural chemical Acetylcholine which helps the signals from the brain reach the muscles throughout the body. Basically this med turns up the volume for a muscle that's slowly becoming 'deaf'

The true treatments are based on reducing the immune a systems attack on the muscles nerve receptors. To do this it's meds like Imuran (I'm taking now) and the addition of cell-cept and or prednisone to suppress the immune system to stop the attacks. Also it's common to go into the hospital for a week to have plasmapheresis or to get IVIG infusions if the symptoms get too bad. Those treatments are the real tools for keeping this from getting worse.

The Mestinon is like taking a pain killer for a headache, it covers up the problems, although in this case it does return muscle function as well it just doesn't solve the problem.

Hello Connie, it's great to hear from you, I hope you are doing well. Yep your exactly right in this path through life one of the few things we do control is our attitude....and that's also the most important thing to control.....so true.

I hope your doing well Connie!