Hello Everyone,

My name is Eddie im a 22 year old male. I was diagnosed with MG back in October. I have been smoking since I was 14 and I really would like to quit. I thought about Chantix but I was really turned off by some reviews. I heard it blocks the neuro receptor for nicotine but that may cause some odd symptoms with MG. Is there anyone that has had this struggle that has any advice? Anything would be appreciated.

*By the way I just want to let everyone on here know that it is really nice and comforting to hear and share experiences each other. MG does make me feel like the odd man out sometimes. Thanks everyone.**

You have found the right site! I have only been on a year and have made the most incredible, wonderful, brilliant friends!

As for the Chantix, please do not take it! I have been advised by my neuro (as have countless others) to not take it as it may have very, very serious side effects to those of us that have MG...........no bones about it!

I have been told by my docs that the patch is OK, but people here on this site have warned me about it - so I'm just gonna have to ride it out.........

Now, tell us moe about yourself - how are you? When were you dx'ed? What were symptoms? Has anyone talked to you about a thymectomy? Are you having problems breathing, swallowing, etc? Do you have someone to call if you do?Do you like your neuro?

Can't wait to hear from you!
Erin

Hey Erin,

Well I started with symptoms back in September of 2007. It started with breathing and throat symptoms. I felt like someone was choking me and I had to make an extra effort to breathe. I was in and out of the ER all of the time. They eventually stopped taking me serioue because everything appeared fine and they just wanted to shoot me up with ativan. I'll tell you what, I knew this was not anxiety but the ER did not believe me. I didn't have insurance until June of 2008 and the local health dept. too also said it was all anxiety. No blood work was ever given. I then started to notice in the beginning of 2008 slurred speech. This scared the crap out of me and no one seemed to notice so I tried to DX myself. I remember I saw the word ALS and it really scared the crap out of me. Pardon the term. Anyways after June I saw a GI doc because of the throat trouble and I also had some minor swallowing difficulties. He actually dialated my esophagus. That didn't help. Then I went to Neuros in my area and in Miami. I went to the Cleveland Clinic who is supposed to be top of the line and they blew me off and thought it was acid reflux. Time after time I was told it was mostly in my head and that I appeared fine. After 3 more neuros, 2 Ents, and an allergist, I finally found my neuro doc. I remember he asked me what I though I had. I told him that it seemed like ALS or MS and it was only presenting bulbar symptoms. Bam! Doc said lets test him for EVERYTHING. I was tested for MS, Lime, Lupus, tons of things. Thats when the blood test for MG came back positive. He sent me to Mayo clinic where the Single fiber EMG was done. It was negative. Just to be safe I asked to have blood work done at a different lab incase they made a mistake. They didnt. My titer actually increased. As of today I am definitely more stable mentally. I really thought I was dying last year and I was really scared. Plus, I had just moved to Florida when this all happened and my family moved back to New England so the only person I had was my girlfriend and her family who probably thought I was nuts. Anyways, I am okay now, I have never taken medicine for it and my symptoms fluctuate. Some days its hard to talk fluently and other days its not so bad. I am refining my diet and hoping my body can figure a way to control in naturally. The only problems I really have is with my speech, swallowing, and rarely my breathing. Fatigue and endurance are a factor as well but I stay physical and play volleyball for 5 hours on Sundays. I dunno. I know Ive said a lot but I had a lot of post in on ALS forums asking questions a year ago. This sounds awful but Im thankful for what I have sometimes. It makes me appreciate life, and other times it does seem unfair. For whatever reason Im just more thankful it happened to me instead of my younger siblings because I would rather go through it. Thanks you for asking about me. You guys, again, are really great to observe. If you would like to know anything else send me a message. I will try to be more social on here rather than reading all the time. Have a great day!

Eddie -
I'm glad you found us, but sorry you had to. I hate hearing about people your age having to deal with this disease! You will have to let us know more about your experiences with MG.

I am one of those that told Erin about the patch problem. I turned into a limp dish rag within an hour of a nurse slapping it on my arm (without my permission, I might add). I was in the hospital and already weak, giving a neurologist my history when this nurse stomped in with it.

Immediately upon finishing the neuro exam they came to get me for some MRI's and the poor little girl that was there to help me in to a wheel chair was not any more prepared for my state that I was. Legs, arms, neck, head, back - all muscles like cooked spaghetti. I'm amazed I didn't have a full crisis then. Of course I knew I didn't like what the patch did to me when I tried it before, but I didn't know I had MG and I don't think there was any info about the patch effect on MG at that time. I just recently found that out.

I also, dummy that I am, started Chantix in Mid December '08. I had been in remission and didn't even think about it. But 2 weeks after starting it, when I hit the maximum dose, I had this exacerbation. I stopped taking it right away then out of instinct, and have since been told definately do NOT take Chantix with MG.

Therefore, I'm not willing to risk using any of the quit smoking aids and figure I'll just have to get myself psyched up to do it cold turkey. If you go for it, please use this forum for support to get you through that. I don't really know how many of us smoke, but I know you will get all sorts of encouragement here.

The one time I did quit (until my car accident and mondo drugs did away with my desire to care!) it was through hypnosis and worked WONDERFULLY. I quit for an entire year, gained no weight, took up an exercise program religiously and felt great!

Sorry Erin - I forgot about that when we talked about this.

I tried to go in for another session after I got off most the drugs, but unfortunately due to ongoing pain I couldn't get relaxed enough for it to work . I've heard others say the accupuncture works too, but I don't know anyone who stayed quit with it.

I've babbled enough!

Best of luck to you, Eddie, and we'll look forward to your input!

Hi, Eddie. I'm sorry you had to go through so much dismissive behavior before someone took you seriously! That usually only happens to us women.

There are places that can counsel you on quitting smoking. There are alternatives to patches like hypnotherapy, etc. I think quitting is different for everyone; though I've never smoked more than a few times so I have no idea what it is like. Sometimes even insurance companies will have free programs you can attend.

22 is so young to have MG. I hope you are able to get around and do things. You be careful down there in Florida! I couldn't handle the heat and humidity down there. When you're out in the heat, it can be really deceptive how you are doing. You may not get weaker until later, or even the next day or two. The immune system is so weird that way. I often get hit more on day two after doing errands.

Everyone here has something to offer, whether it's knowledge or experience or support or just a laugh. Sometimes it's hard for people to be on here because we can feel like crap and just not want to talk. And this disease is so unpredictable that it makes handling it, physically and emotionally, like a roller coaster ride. I try to focus on what is good, even if some days it's hard to see it.

Annie