In trying to figure out what triggered this particular flare, I was checking everything I may have done differently prior to the flare. I had gotten Chantix to help me stop smoking, as I was advised that it would increase my chance of developing more brain aneurysms. I had just gotten built up to the max dose prior to my coiling procedure, so I thought I'd see just how this new wonder drug (it does work well for quitting, by the way), works to help control the craving.

It works by blocking the receptors for the nicotinic ..... and one site I stumbled on was the head of neurology of I believe Penn State that stated there were no test on myasthenics because we are rare, but because of the action the drug uses he advises definately NOT to use it.

Also, the nicotine patches will exacerbate the weakness in a Myasthenic, which I have direct experience with, although I didn't know that's what caused the extreme problem years ago when it happened.

Guess I'll get a combo of hypnosis, accupuncture and anything else to help me, cause my will is very weak and my addiction very strong.

Hi Becky,

how very frustrating for you!!! Its something I've never done,(smoke) so I cant imagine what you are going through, but I hope you find something that helps you!!!

Kate,

Some are just smater than others!

I started smoking at 13 and loved the very first one. I'm 52 now and have no lung problems (was thoroughly checked out by a specialist) and had absolutely no desire to quit, which is why I am searching for help. You'd think the knowlege that it may be affecting the myasthenia and that it will increase the risk of more brain aneurysms would be enough motivation, wouldn't you. But, unfortunately, addiction isn't based in common sense!

Thanks for the sympathy. Hope you're doing well. We don't hear from you real often!

Hi Becky,

Yep just lately I've been rather tired, I think I was fighting some sort of gastro. Whatever it was I was just so very tired, and although I came onto the forum, I havn't been posting much, hopefully I'll have a bit more input from now on.

Yesterday I went to Riding for the disabled as a volunteer, for the first day. It was great day, I loved working with the horses and seeing the clients reaction when they started riding, Iam definatley going back, I'm sure its doing me good as well.

Yep I'm glad my 2 big brothers said when I was young, that If I ever took up smoking they would beat me up, I never even tried one, and am thankfull now.
take care

Becky, The drugs that are contraindicated for MG may affect some people more than others. If you had a flare from it, then you should probably stay away from it.

There are places that can help you quit smoking with lots of alternative medicine like hypnotherapy.

Addictions are not easy at all to overcome. And no, it sure doesn't make sense why you wouldn't quit cold turkey if smoking could kill you but it DOES actually make sense.

Have you ever been tested for antiphospholipid antibody syndrome? It's pretty common in MGers and people with other autoimmune diseases. A friend of mine with MG has it and has to be on blood thinners.

I hope you find something to help. It sucks that so many drugs can make MG worse.

Redtail, That riding for the disabled sounds wonderful. I miss being around horses. What a great thing to do for disabled people.

Annie

Very interesting. My new, wonderful, specializes in Myasthenia Gravis (aren't many like that!) neuro that I just saw today confirmed - definately stay away from Chantix if you are myasthenic, because the receptor it blocks is the very receptor that we have trouble with already. So....now I know.

Also, Annie, your comment that is DOES make sense that I can't find the motivation to quit even if it could mean death via stroke has more meaning tonight than before. I am showing strong spinal cord symptoms in addition to the MG, as I do off and on. A couple of reasons could be the previous cord compression in my neck and some possible current instability at my last fusion site, or she mention polyneuropathy which I looked up and, large bummer!, it fits all to well. I'm not real sure but that a quick major stroke wouldn't be easier on myself and my family down the road than what I may be facing if I live real long (my family lives to the 100's). I'm not suicidal or anything, but I do believe that quality beats quantity hands down.

Becky

Oh, Becky, there's so much they can do now for any kind of neuropathy! Don't you dare despair yet! And surgery should be the last option with back crap, even though many people opt for that and it is the only answer in SOME cases. My friend had a full spinal fusion and is in constant pain. It did not help her. But she has degenerative disc disease, which is different.

Have you been checked for a B12 deficiency? That's a place to start. It can cause neuropathy.

I'm glad you like your new neuro. Maybe she can figure all this out.

Don't wish for a stroke! You could have a partial stroke and then have to live as an invalid for who knows how long. I seriously think testing for some clotting disorders is a good thing.

I have no idea how hard it is to quit smoking. I never started because my Dad smoked. But you know it's bad on the circulatory system. You CAN quit. And talk to your doctor about CoQ10 to help with circulatory/antioxidant issues. They use that a lot in Europe. I take 100 mg. twice a day. And aspirin - or are you on that already? And you are in your 50's. Hormones - or lack of them - can wreak havoc on the body. Has anyone checked your thyroid or adrenals or anything else?

Don't give up. I really do know what it's like to have too much happening with the body. You have to work really hard on focusing on what is good and not the bad. I know that's hard but if you set yourself up for success, you can do it. Being sick is a full-time job and it does take a lot of work to feel good.

One of my favorite movies is Castaway. It's all about survival; physical and emotional. In the end, Tom Hank's character says "You never know what the tide will bring." Like a sail. Or health answers to make you feel better. Or waking up one day hating the taste and smell of smoke.

So don't give in just because you're a good person who happens to have something bad happening to them.

Annie

Hi Annie,

Thanks for the concern and support. I'm in a better frame of mind today than last night, though.

Dr. P. ordered a blood test for B12, vit E and copper levels. I have to check the copper thing out - that's a new one to me!

I'll be posting some info. she gave me that I think would be of interest to others on the forum. She's really very sharp and I'm really impressed with her knowlege of all the new info I've seen on MG. I do believe she's better that even my old fav. neuro I lost due to insurance changes.

I have absolutely no doubt that Chronic Demyeliniating Inflammatory Polyneuropathy is the cause of the other issues that have plagued me since my very first severe incidence with MG. Every single symptom describes my symptoms that are not MG that have had all the neuro's so confused. There is a high incendence of MG occuring with this disease. One of my old tests, evoke potential / nerve velocity, showed "something" that the neuro then expected to end up being MS. This disease is like MS except it attacks the myelin in the outer limbs instead of the spinal cord/brain myelin. I would appear to be taking the more severe recurring path, because over the years I am displaying the progression symptoms - right down to this new blind spot in my right eye.

The surgeon that coiled my aneurysm in January thought my blind spot was due to a type of stroke, but he had me see an opthalmalogist to rule out other causes, confirm stroke, etc. I had a field of vision test done Thursday, and he is puzzled. It is definetly NOT a brain stroke of any kind, shows up like glaucoma but I absolutely don't have glaucoma - he told me he's concerned, confused because he's never seen it look like this test showed. I put in a call to him today to check on the CDIP and how it would show when it starts to cause the reduced field of vision. But when I saw that on the CDIP progression symptoms, it was like a punctuation mark for me.

Anyway, my hubby and I decided today that I will apply for disability, we'll sell off some stuff to pay bills, I'll see if my boss (who is just wonderful, by the way) will allow me to perform accounting duties as a contract employee so I can cut my hours way back and get more rest. He suggested that when I had my last flare, then I started to pull out of it so...

This way I can devote more time to enjoying life to the best of my ability instead of spending all my off time resting to get ready to work every day.
And I can get more rest and hopefully slow this stuff down or even beat it (wouldn't that be awesome), having the energy to do the research into treatments etc. Also, my son just married last year and I'm told it will be a couple of years before they give me my second grandchild - my daughter had a girl 10 years ago that has been the light of our lives!

So I've got to stick around long enough to spoil that one too and watch it develop like have I with Alexis. It wouldn't be fair to my son otherwise, right? And while I'm waiting, instead of resting up on off time to work full time, we'll actually get to do some camping and fishing this year!!! YEAH!!

You see, I really am an optimist, but I'm also a realist so my goal now is to enjoy life within my limits - maybe pushing them a little - and do my best to stay functional as long and as much as possible.

You take care and have a great night. Thanks again for the encouragement!

All good news I see!

What a fabulous support group you have! Praise God!

I am so happy for you!

Big hugs!
Erin

Yes, Erin I am VERY fortunate in the support I get. Everyone from family to neighbors and coworkers/boss are the most awesome bunch of people any broken down 'ol lady could ever hope to be surrounded by!!