Hi, Alice

Thank you for your reply. It just breaks my heart to hear of all that so many MGers go through--and are STILL going through. It's a nightmare at times anyway and to have a Dr. make it so much worse is just so frustrating is too nice a word. I have two wonderful Drs who work very closely together on me--my PCP and my Neurologist. It's very common when I see my PCP that he may call my Neurologist during the visit or use the computer to directly "speak" to him. They are in adjoining towns but are linked in the same system. I nothing but benefit from their relationship.

My PCP is going to discuss Fosamax next week with me. He said he has delayed this as long as he could. What I have read on the internet about Fosamax since scares me right to death. The side effects of it are scary and some would make the MG worse. I would appreciate any input you can give me regarding Fosamax! Yikes!

Thank you, Alice!
Grace

Unfortunately there is no black or white answer to your question. Like you say, there are certain risks involved with this treatment, but also risks with long term use of relatively high doses of steroids, without this treatment.

I think it is something you, your PCP and neurologist should discuss together, with a close follow-up on your response. It may also be a good idea to involve an expert in the field of osteoporosis, and check your current bone-density (if that was not done yet).

It is important to check your vitamin D levels and make sure that you receive enough calcium and other minerals in your diet. Also, if your condition allows, it is advisable to do weight bearing exercise. (bone tends to build in areas that are under the pressure of gravity).

Hi,

I just had a bone density scan done on June 2. The lady who did it isn't supposed to say anything but she said I could expect to hear from my Dr. that it was normal. My spine and hips looked good. My Vit. D level last March was 36. That is one area neither of my Drs seem to be real interested in monitoring--vitamins. My PCP was going to discuss the Fosamax with my Neuro and when I see him next week was when we were going to have the "conversation". I called my dentist to ask if he had many patients on Fosamax and how did he feel about it. But he doesn't seem to and his office referred me to an oral surgeon who is knowledgeable re: Fosamax. But it would cost me about $100 to go in and talk (only) to him about it. My dentist refers patients to him all the time and they had wondered if he might do it for free--which I wouldn't expect. But it was a surprise. This oral surgeon could have billed under two different codes. One code my dental insurance would have paid for it and it didn't involve an exam. The other code--which he said he would have to bill under--involved an expense to me and I don't require an exam. And in years past I have gone to him as a patient. My regular dentist is not going to be impressed I know. Believe me--this oral dentist knows I don't require an exam. I had his receptionist go BACK to him and explain that.

I would like to hear from anybody who is on Fosamax and what they might recommend. I just hate the idea of going on it especially if I'm OK right now.

Thanks for your input, Alice. It's appreciated. I'm home today with post nasal drip, coughing and sound terrible. Going to call my PCP shortly...

Grace

I am not sure if I am doing this right, but I would like to know if you are sero negative are you highly likely to be musk positive. My original mg blood test for the antibodies came back normal in all the three test for antibodies. Just had a musk antibody test done several days ago and was wondering what I can expect

If you are sero negative, that would normally indicate that you were negative for ACHr MUsK and LEMS antibodies. But being sero negative doesn't mean that you haven't got it.