Much has changed since my last update. Where to begin?
I haven't had any Albuterol or Ephedrine in over a year. I have not smoked cigarettes in over 6 months and have not smoked marijuana in over a year and a half.
It's is safe to say at this point that Albuterol and Ephedrine helped me the most as bronchial dilators in combating the negative effects of smoking (lack of oxygen).
I am in the gym 4 days per week now, I am on the elliptical machine for an hour, and then weight training for another 2 hours after that. I use Creatine as a supplement, and also take protein powder. I have gained 20 pounds over the last year.
I can run a mile in under 10 minutes, I can easily bike 20 miles or more.
If you have CMS. Please, don't smoke.
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"Father and Son"
About Me
- CMS Ken
- Colorado, United States
- This blog offers information on Congenital Myasthenic Syndrome (CMS) from a patient perspective.
CMS Ken
"Father and Son"
Ken's Current Status
Age: 41
Weight: 165
Height: 6' 1"
Diagnosis:
Congenital Myasthenic Syndrome (CMS) - defective Epsilon sub-unit in acetylcholine receptor (both sides).
Meds(taken with meals):
Mestinon (pyridostigmine bromide) 1 x 60mg tab 3-4x daily
Neurologist:
Dr. Steven P. Ringel, M.D., Professor of Neurology
University of Colorado at Denver and Health Sciences Center
Weight: 165
Height: 6' 1"
Diagnosis:
Congenital Myasthenic Syndrome (CMS) - defective Epsilon sub-unit in acetylcholine receptor (both sides).
Meds(taken with meals):
Mestinon (pyridostigmine bromide) 1 x 60mg tab 3-4x daily
Neurologist:
Dr. Steven P. Ringel, M.D., Professor of Neurology
University of Colorado at Denver and Health Sciences Center
7 comments:
Ken!! I've missed seeing you talk on your blog!! TALK MORE. So very proud of you. MEssage me and let me know how you are doing!
big hugs!
Andrea
Hi Ken, I just want to thank you for putting your story out there as it has helped my sister tremendously. She was first diagnosed with Myasthenia Gravis at the age of +-10 years old and was put on Mestinon and then at +- 14 years was put on Ephedrine tablet as well. Then in 1997 the Ephedrine tablet was taken off the market and she went to see a new Neurologist who tested her and said she had CMS and needed
Ephedrine so she was given a script but could only get the Ephedrine in powder form. The pharmacy used to mix the powder with a syrup and she was fine with this. Last Year the pharmacy said they could no longer get the Ephedrine powder. My sister started getting weaker and weaker and the Neurologist said she must try taking Sinu-Med as it had some Ephedrine in it but this did not help. It was at this time that I read your blog and saw that your symptoms were the same and you went through the same problems. I told her to take your story to the Neurologist and ask if you can also try Albuterol. She said it was no harm in trying and prescribed it for her. What a difference this has made, she has got her strength back and she says she is feeling better than when she was taking Ephedrine. Thanks again. You can contact me on email at jpereira@emea.att.com .
Hi Ken, I just want to thank you for putting your story out there as it has helped my sister tremendously. She was first diagnosed with Myasthenia Gravis at the age of +-10 years old and was put on Mestinon and then at +- 14 years was put on Ephedrine tablet as well. Then in 1997 the Ephedrine tablet was taken off the market and she went to see a new Neurologist who tested her and said she had CMS and needed
Ephedrine so she was given a script but could only get the Ephedrine in powder form. The pharmacy used to mix the powder with a syrup and she was fine with this. Last Year the pharmacy said they could no longer get the Ephedrine powder. My sister started getting weaker and weaker and the Neurologist said she must try taking Sinu-Med as it had some Ephedrine in it but this did not help. It was at this time that I read your blog and saw that your symptoms were the same and you went through the same problems. I told her to take your story to the Neurologist and ask if you can also try Albuterol. She said it was no harm in trying and prescribed it for her. What a difference this has made, she has got her strength back and she says she is feeling better than when she was taking Ephedrine. Thanks again. You can contact me on email at jpereira@emea.att.com .
Hi Ken,
Your blog it's very interesting, thanks for the information you give to all of us! I am still learning a lot on this disease...I would really like to ask you some questions and share my story with you, maybe you can write me an email: susy.pelzer@gmail.com
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Thanks for sharing such informative post keep updating. Keep updating.
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