I have been reading the PN forum for about 10 years because of my PN, and now I've added MG because of my husband's recent diagnosis. He had rheumatic fever as a kid and had to spend a year in bed--he's 82 now and they didn't have antibiotics back then. However, he has to take an antibiotic prior to any dental work, even a cleaning, now because they have learned that sometimes there's a kick-back to the rheumatic fever which has caused heart attacks in some individuals.

I contacted MrsD in a PM and told her about my husband and she suggested I ask Annie3B which antibiotics he should now avoid becauses of the MG. The dentist has been prescribing some form of penicillan in the past. The only other medication he takes is eye drops for glaucoma.

The neurologist who diagnosed him from a blood test is talking to him about IVIG and "a little bit" of prednisone--so I've found the threads about IVIG especially informative.

Joan

Joan, I'm glad Mrs. D. sent you our way. There are a lot of really great people here, who have loads of good info and support.

My dad had rheumatic fever in the Navy. It led to his aorta being damaged, high BP, and eventual kidney failure. Does your husband have any heart damage? Has he been fully assessed by a cardiologist? If not, he should do so.

I'm not a doctor, so I can't "recommend" any antibiotics. The premed that is often used for dental is Keflex/Cephalexin. Amoxicillin is good, too. No problems for MGers with those drugs.

Two drugs an MGer should not have are Ketek/Telithromycin and the Quinolones.

Here is the MG Foundation website's drug information.

http://www.myasthenia.org/Livingwith...gstoAvoid.aspx

The PDF format.

http://www.myasthenia.org/LinkClick....Q%3d&tabid=318

There's no such thing as a "little bit" of Prednisone, especially for someone with other health issues or someone elderly. And IVIG in someone with any heart issues can be problematic, too.

I highly recommend a consult with a cardiologist first. Then a consult with his primary doctor to go over all drug issues.

Has anyone said that he should have a CT to look at his thymus? That is often standard for anyone with MG. They try to "force" patients to have contrast with the test, but it is NOT required or necessary. Some patients with MG have a thymoma, a tumor of the gland.

I'd also suggest that he have his Vit. B12, Vit. D, and thyroid checked, if he hasn't already.

Having MG is not a simple issue. For example, being out in the heat or getting heated up can make MG far worse. Getting enough sleep is essential, and naps are often necessary. Alternating activity with rest helps, too.

If he has any breathing issues, he should be fully assessed by a good pulmonologist. A neuro manages MG, but so does a pulmonary doctor.

What else can we help with?

I hope you have a primary doctor who can pull all of this together. It's important to not rely only on a neurologist when you have MG. They are specialists, and may not "see" someone's overall health issues.

Please tell your husband that he's welcome here any time, and that I hope he will have his MG well-managed so that it doesn't effect his life too much.

Annie

Thanks for your quick response to my email, Annie. My husband's primary doctor is a cardiologist/internist, and he sees him twice a year. He doesn't have any cardio problems that have turned up so far.

He went to our opthalmologist when his eye started drooping and he did a thorough exam and couldn't determine the problem but did refer him to the neurologist who ordered the blood work--with contrast--and from that he determined the MG. He also told my husband he had treated his own mother for MG so he knew a lot about it. He's going Monday for a CT of his chest so maybe that will include the thymus (?)--he thought it was for his chest. Also, starting Wednesday, he begins 3 IVIG treatments of gamma goblin. They're going to call tomorrow with more specifics.

"A little bit of prednisone" must be like "a little pregnant." Neither one of us wants him on that for a whole bunch of reasons. I think the pre-med he's been taking before dental appts is amoxicillin. So it's good to know that one is on the preferred list. I knew about quinolones being bad for PN so just assumed he shouldn't take them either--we also don't eat nightshades or wheat. We've both been taking a lot of supplements and probiotics and are in pretty good health except for these nerve problems--strange both of us would have issues with our nerves.

He's a Vietnam vet and was exposed to Agent Orange while over there. When he came home he retired shortly thereafter (in 1975), and I became interested in fortifying his body with vitamins and supplements to try to make him resistant to anything he might develop from the Agent Orange--he was also a red-head and has had multiple skin cancers, including a melanoma. He still works as an engineer for several pool companies in the area--is busy about 3 days a week with that and goes to the airport everyday, goes late and comes home early--it's his business that my son is running now, but he can't stay away. Then he has a nap before dinner and one afterwards.

We live in Texas and I do worry about him in the Texas heat. I don't like being out in it in the summertiime either. Thank goodness for A/C! I've been following your forum ever since he was diagnosed, and appreciate the tips on the two websites which I am going to look at now. He has another appt. with the neurologist on June 10, and he wants him to bring his wife with him! Probably cuz he told him I didn't want him to be on prednisone--some arm tristing maybe??

Thank you again for your quick response. Thanks also for inviting him to visit the website--he doesn't use the computer--says it hurts his eyes.

Joan

Going with him to all his appts is a great idea. My wife and I have done this since I came down with MG. It really helps a lot. I suggest a lot of reading for you and a lot of cool rest EVERYDAY. I sleep 10 hours at night with a 2 hour nap. Coffee helps me a lot. I retired from the Navy in 1982.
Mike

Joano, if you are already avoiding nightshades, then I would avoid caffeine too, it is more potent than nightshades are.