Monday, December 1, 2008

As good as it gets....

I stopped taking Albuterol 2 weeks ago, just to see what happens. Guess what happened? Nothing! I'm *still* not feeling any CMS symptoms.

I definitely have my health back. I'm feeling great.

I also have an awesome new job in Boulder as an IT/Ecommerce Manager.

With health and wealth back in my life...there's only one thing missing!

Friday, September 26, 2008

Am I still sick?

I don't even know that I have CMS anymore. I don't have any symtoms. I've only been taking 1 60mg Mestinon tablet, and 1 2mg Albuterol tablet 3 times a day (with meals)...and I don't feel ANY symptoms...none.

I feel so good lately that I forget how bad things had gotten for me. I'm eating like crazy, I'm lifting weights, I've taken my mountain bike around our neighborhood lake twice (2 laps - 2.5 miles each time) this week.

Of course, my attitude is infinitely better. I also have a new permanent full-time job doing web and graphic design, which is very satisfying.

The only thing missing is my wife.


Tuesday, September 2, 2008

The Silver Bullet - Albuterol

I had recently noticed in my comments that some of you CMS patients are having success with Albuterol (thanks Marika & Denise!!!).

I had a follow up appointment scheduled with my neurologist, Dr. Ringel almost 2 weeks ago so I thought- why not ask him If I can try it?

I've been on Ephedrine Sulfate capsules the past 4-5 months (and mostly happy) so I wasn't in a big hurry to try something new, but I got a prescription for 2mg tablets of Albuterol and took my last Ephedrine capsule on Saturday, Aug. 23.

It's been 10 days since i've been taking Albuterol, I take a single 2mg tablet each time I take a 60mg Mestinon (3 or 4 times a day).


I feel soooo much better!

My preliminary feedback is that Albuterol works MUCH BETTER than Ephedrine in treating my CMS symptoms, and without the nasty Ephedrine side effects. I have always used my chewing as a barometer for how the rest of me is feeling- I can CHEW MY FOOD AGAIN!

I'm very excited!

Thanks again to Marika & Denise!!!!

Friday, June 27, 2008

Ephedrine vs. Stress

I've been back on the Ephedrine for about a month now, and i'm definitely getting my strength and energy back. I'm taking care of the yard again, playing more with my kids, and taking on more consulting work. I'm also able to chew my food better, which means I'm eating more. That's good!

I think stress is one of the biggest aggravators of CMS. I know that the problems i'm dealing with in my life right now are a huge contributing factor. I carry a lot of stress in my neck and shoulders, and really feel crippled in being able to use my arms when the pain and stiffness gets really bad.

Things are getting better...

Thursday, May 22, 2008

Ephedrine is shipping today.

So i've been ratcheting up the pressure the last couple weeks trying to get the Ephedrine to flow, and when I last spoke with Melanie at West-ward, she told me that GPSI isn't going to be able to make good on their contract to do the gelatin banding (at least for now). That pretty much means that there won't be any new Ephedrine shipping for a while. Good thing there's old Ephedrine to ship, eh?

Yep....that's right! Melanie told me that since GPSI has dropped the ball, West-ward has decided to re-label and re-stock some EXPIRED product that they had in order to fill my prescription.

Well, obviously that's a tough pill to swallow (pun) because they could have easily re-labeled and re-stocked this expired product MONTHS AGO. All this suffering i've gone through could have been avoided with just a little paperwork.

I got a call a few minutes ago from Joe, the lead pharmacist at King Soopers and he told me that he was able to successfully order 6 bottles from his wholesaler Cardinal. And then he told me it would take 5-7 business days to ship.

I just about freaked out.

Of course, I was again on the phone immediately with West-ward asking if they could drop-ship FedEx overnight to my pharmacy. At this point, if it's a cost issue for overnight shipping, I AM WILLING TO PAY. Joe quickly called me back saying it would ship today, i'd have it tomorrow.

We shall see.

Tuesday, May 6, 2008

West-ward vs. GPSI

I've learned through various phone calls that West-ward Pharm. has contracted with Generic Pharmacy Services, Inc. (GPSI) to provide gelatin banding for their Ephedrine sulfate product. It's frustrating because i'll talk to Melanie at West-ward and she'll PROMISE me it's GPSI's fault the product is backordered, and then i'll call GPSI and Mary Madagen will PROMISE me that the hold-up is with West-ward. Both of them talk about expired product, FDA and DEA regulations, quotas, etc...but I can't pin anyone down on who's desk the paperwork is held up on.

Well, anyway my wife left me two weeks ago. She moved to a house not far away, and needless to say i'm devestated. I guess I don't blame her, really- i've been struggling with my health for some time, and she must be as frustrated as I am. I love my wife and family, and i'm sad I don't have the strength or energy to be doing more work around the house. To be sure, my attitude has suffered as well and i'm not always the most cheerful person to be around.

In a state of total desperation, I called West-ward late last week and demanded to speak with the CEO, Nabil Rizk. I guess I couldn't believe it when his assistant, Karen, managed to get him on the phone this time (i've asked several times previously). I basically told him that my wife left, and that I didn't want to fall down the stairs or choke on my food and die alone.

Mr. Rizk was very sympathetic and even told me a story about how his dad died when he was young, and that he got into this business to help people, not make money. He promised me that they we're lighting all the fires they could, and that it should be this week when the Ephedrine is available again.

It looks like I'll be healthy again soon, I hope so.

Thursday, April 3, 2008

The search for Ephedrine Sulfate

On March 9, 2006, President Bush signed the Combat Methamphetamine Epidemic Act of 2005 (CMEA), which is title VII of the USA PATRIOT Improvement and Reauthorization Act of 2005 (Pub. L. 109-177).

This is important for anyone who has a medical need for Ephedrine, because Ephedrine is one of the main ingredients in making Methamphetamine.

I've been searching for Ephedrine for the last several weeks, after being told by my pharmacy that the medication is backordered at the manufacturer- West-Ward Pharmaceuticals. After numerous calls, I finally spoke with Melanie who told me that Generic Pharmacy Services, Inc. (GPSI) is a contractor who supplies gelatin banding for their Ephedrine capsule product, and that GPSI is waiting for proper licensing from the U.S. Drug Enforcement Agency.

If you are suffering with a medical condition, and have been told that Ephedrine is backordered- you can thank your government.

Helpful Information-

West-Ward Pharmeceuticals (A Hikma Company)
Phone - 732-542-1191
Customer Service (Melanie x2819), x2812, x2820

Generic Pharmacy Services, Inc. (GPSI)
Phone - 631-348-6900
Web -

U.S. Drug Enforcement Agency
N.J. District Office
Phone - 973-776-1300, 973-776-1172

Anyone else have any useful information?

Tuesday, March 18, 2008

Mestinon, Ephedrine, 3,4 DAP, EN101

If you have CMS, these are pretty much your treatment options right now. Well, really...Mestinon is your only option unless you don't mind jumping through a bunch of hoops.

Let's review-

Ephedrine is derived from Ephedra which comes from the Ma Huang plant- largely used in traditional Chinese medicine for the past 5000 years. It's used primarily as a decongestant and to treat low blood pressure.

On April 12, 2004, the US Food and Drug Administration issued a ban on dietary supplements containing ephedra because of it's use in making crystal methamphetamine. As a result, there is now only one place to get Ephedrine Sulfate, and that's West-Ward Pharmaceuticals.

3,4 DAP or 3,4-Diaminopyridine is a research chemical currently being used to treat Lambert-Eaton myasthenic syndrome, and some flavors of CMS (apparently mine). In order to get 3,4 DAP your neurologist will have to administer lab tests every 3 months, serial ECG's and an electroencephalogram. It looks like there are some chemical supply websites that will sell 3,4 DAP - Spectrum Chemical has it for $45.25 per gram.

EN101 is a research medication made by Amarin Corporation and is currently in Phase IIa clinical study- mainly in the UK and Israel. EN101 is being developed as a replacement for Mestinon.

So there you have it.

Thursday, February 7, 2008

I need help finding Ephedrine.

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!!! ;)

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!