I've been taking Ephedrine Sulfate USP capsules 25mg three times per day for the past 2-3 months at the recommendation of my neurologist, Dr. Ringel. I had my doubts about Ephedrine working, to be honest- but it does help my CMS. I was surprised after just the second day on the Ephedrine, I found myself able to skip-a-step going up the stairs, whereas before I would have to literally drag myself up. I'm holding my kids again, which is awesome, and it's much easier to shower and dress myself- which means I get a shower every day if I want again, yay!
Ever since my normal dosage of Mestinon decided to just stop working...i've been panicked that I'd be suffering with the CMS effects the rest of my life. I feel lucky in that the Mestinon has seemed to work very well for me the past 35+ years.
Ephedrine has really made a difference in my ability to do all those things I was doing....but i'm having trouble getting it.
King Soopers pharmacy had trouble filling my first prescription and I complained, so then they thought they were getting smart by ordering an extra bottle...but now they're telling me it's backordered from the manufacturer- West-Ward Pharmaceutical Corporation.
I called West-Ward, and whomever answered the phone told me "a license is needed to distribute" and it won't be available until mid-April. Well, that didn't make sense to me, so I called back and after a bit of pressing, was told that they're actually waiting on a vendor to obtain the license. I asked to speak with a supervisor, and was put into Melanie's voice-mail. I left a message, but Melanie has not called back!
Does anyone know? Is West-Ward the only game in town for Ephedrine?
I have a valid U.S. prescription, and I NEED Ephedrine Sulfate. If you know where to find any, please contact me. I have a compounding pharmacy to work with if you don't have capsules, and i'll pay top dollar! I prefer not to suffer until mid-April at the hands of beauracracy. Thx!!! ;)
Thursday, February 7, 2008
Sunday, February 3, 2008
I have Congenital Myasthenic Syndrome (CMS)
About a year ago, I fell down the stairs- twice in less than a week. This was unusual, because I almost never fall down. I started to notice that I was losing strength/energy to do normal things around the house- mowing the lawn, shoveling snow, even cooking was difficult. Things got worse, and I found myself unable to bathe or dress myself, chew or swallow, or pick up and hold my kids.
What is happening?
I have Congenital Myasthenic Syndrome (CMS) which is a relatively new term for what i've always been told I have- Congenital Myasthenia Gravis. I was diagnosed with this when I was a toddler by Dr. Robert S. Zeller- a Houston, TX child neurologist. I had always had a very weak cry when I was an infant, and didn't make some of the developmental milestones at an early age. My parents became most concerned when I nearly choked to death several times graduating from baby food. Nobody could figure out what was wrong with me, and I had many, many tests. Finally, Dr. Zeller was asked to meet me, and when he took one look at me he said- "Myasthenia Gravis". I was given a Tensilon test, which immediately gave me my energy and strength back. I've been taking Mestinon ever since- as much as 180mg 3 times per day.
Life was pretty much normal for me after that- although I grew up a little bit skinny and weak- I could still mountain bike, snowboard, jog, weight train and tons of other activities.
Why isn't this Mestinon stuff working anymore?
Over the past couple years, I had been developing stomach probems- cramps, bloating, difficulty going to the bathroom with increasing severity....and after several different gastro doctors- finally discovered that I was lactose intolerant. I had hoped that fixing my stomach issues would help improve my CMS, but unfortunatly that didn't happen. I suppose i'm happy that the Mestinon wasn't causing the stomach problems (which I had feared).
I was sent to an Endocrinologist for thyroid tests, my neurologist (Dr. Ringel) ordered an EMG, and my bloodwork was shipped off for genetic testing to determine exactly what flavor of CMS I have. After a few weeks, my results were back- no thyroid problems, and the genetic work shows a defective Epsilon sub-unit in my acetylcholine receptor- but BOTH sides of the chromesome are defective. My dad was adopted, and both of my parents are from the Dallas, Texas area- so it's entirely possible that my parents are somehow related.
Dr. Ringel offered a prescription of Ephedrine Sulfate 25mg capsules 3 times per day- to be taken in conjunction with Mestinon 60mg tablets 3 times per day. He also presribed Sertraline to help combat stress and depression.
I had my doubts about the new drug combination working, but it does work! I am again able to do many of the daily activities I once enjoyed. Let's hope it lasts!
What is happening?
I have Congenital Myasthenic Syndrome (CMS) which is a relatively new term for what i've always been told I have- Congenital Myasthenia Gravis. I was diagnosed with this when I was a toddler by Dr. Robert S. Zeller- a Houston, TX child neurologist. I had always had a very weak cry when I was an infant, and didn't make some of the developmental milestones at an early age. My parents became most concerned when I nearly choked to death several times graduating from baby food. Nobody could figure out what was wrong with me, and I had many, many tests. Finally, Dr. Zeller was asked to meet me, and when he took one look at me he said- "Myasthenia Gravis". I was given a Tensilon test, which immediately gave me my energy and strength back. I've been taking Mestinon ever since- as much as 180mg 3 times per day.
Life was pretty much normal for me after that- although I grew up a little bit skinny and weak- I could still mountain bike, snowboard, jog, weight train and tons of other activities.
Why isn't this Mestinon stuff working anymore?
Over the past couple years, I had been developing stomach probems- cramps, bloating, difficulty going to the bathroom with increasing severity....and after several different gastro doctors- finally discovered that I was lactose intolerant. I had hoped that fixing my stomach issues would help improve my CMS, but unfortunatly that didn't happen. I suppose i'm happy that the Mestinon wasn't causing the stomach problems (which I had feared).
I was sent to an Endocrinologist for thyroid tests, my neurologist (Dr. Ringel) ordered an EMG, and my bloodwork was shipped off for genetic testing to determine exactly what flavor of CMS I have. After a few weeks, my results were back- no thyroid problems, and the genetic work shows a defective Epsilon sub-unit in my acetylcholine receptor- but BOTH sides of the chromesome are defective. My dad was adopted, and both of my parents are from the Dallas, Texas area- so it's entirely possible that my parents are somehow related.
Dr. Ringel offered a prescription of Ephedrine Sulfate 25mg capsules 3 times per day- to be taken in conjunction with Mestinon 60mg tablets 3 times per day. He also presribed Sertraline to help combat stress and depression.
I had my doubts about the new drug combination working, but it does work! I am again able to do many of the daily activities I once enjoyed. Let's hope it lasts!
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