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Old 10-12-2016, 07:14 PM   #11
Juanitad
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I can't remember the exact one, but ones to definitely avoid are Cipro, Avelox, and levaquin. There may be more than this, but these have a black box warning not to be used if you have mg. (Ask me how I know! 7 days in ICU after taking Levaquin for a urinary tract infection). The website for the Myasthenia Gravis Foundation of America has full lists of which drugs affect mg and how. A good place to check.

Annie is right, this will not be a miracle cure for mg, but it is definitely something you need to get taken care of.
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Old 10-13-2016, 10:39 PM   #12
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I saw the muscle and nerve specialist today. Since i have fatty liver and bone thinning condition, she would not put me on any additional treatment yet. She increased the mestinon dose to 90 mg 3 times a day. And that's it. I guess with the liver and bone problems, i would not be able to have any additional treatment then. This is bad! Really bad!
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Old 10-14-2016, 02:04 AM   #13
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Has anyone figured out why you have a "fatty" liver?

Do you drink a lot of alcohol? Do you have high blood pressure? What are your cholesterol levels?

As far as the bone thinning, you need to see an endocrinologist.

Are you a cola drinker? The phosphorus in those drinks sucks the calcium right out of the bones. Or you could have a parathyroid condition or something else going on.

Either of those two things "might" be able to be counteracted by diet and supplements. BUT you need to see specialists (not a neurologist) to determine what the causes are.

It's possible that you might be able to recover either of those two issues.

IVIG—correct me if I'm wrong, guys—is cleared by the kidneys. It should have no effect on those conditions!

There is also Hizentra, or SubQ IVIG. If you don't have a problem with needles, that could be an option. It's injected into the lower abdomen.

There's a lot of paperwork involved in providing a patient with IVIG. Many neurologists won't do it as an ongoing treatment. One, it's very expensive. Two, again, paperwork. And the insurance companies are mainly to blame for this. They have determined certain conditions that make routine/chronic IVIG use okay. IVIG has been labeled for use in MG only in acute situations, such as a MG crisis.

So see a couple more doctors and figure out WHY you have those conditions and what might be done about them.

Don't give up! I honestly don't think that neuro could simply say, "No" without suggesting that you determine cause of the conditions and if there are treatments for them! While I understand the concerns, that's not thorough doctoring, in my opinion.

And a higher dose of Mestinon isn't necessarily what will work for you. Many people take it more often throughout the day at first. I personally do better on a consistent dose. I am at 90 - 100 mg. every three hours (sometimes sooner) around the clock. HOWEVER, don't change your schedule without speaking to a neuro about it.

Take it easy, okay? I'm really sorry that you didn't have better news. I do okay on only Mestinon, but I don't work (can't) and my life is pretty substandard.

Annie
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Old 10-14-2016, 11:58 AM   #14
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Quote:
Originally Posted by AnnieB3 View Post
Has anyone figured out why you have a "fatty" liver?

Do you drink a lot of alcohol? Do you have high blood pressure? What are your cholesterol levels?

As far as the bone thinning, you need to see an endocrinologist.

Are you a cola drinker? The phosphorus in those drinks sucks the calcium right out of the bones. Or you could have a parathyroid condition or something else going on.

Either of those two things "might" be able to be counteracted by diet and supplements. BUT you need to see specialists (not a neurologist) to determine what the causes are.

It's possible that you might be able to recover either of those two issues.

IVIG—correct me if I'm wrong, guys—is cleared by the kidneys. It should have no effect on those conditions!

There is also Hizentra, or SubQ IVIG. If you don't have a problem with needles, that could be an option. It's injected into the lower abdomen.

There's a lot of paperwork involved in providing a patient with IVIG. Many neurologists won't do it as an ongoing treatment. One, it's very expensive. Two, again, paperwork. And the insurance companies are mainly to blame for this. They have determined certain conditions that make routine/chronic IVIG use okay. IVIG has been labeled for use in MG only in acute situations, such as a MG crisis.

So see a couple more doctors and figure out WHY you have those conditions and what might be done about them.

Don't give up! I honestly don't think that neuro could simply say, "No" without suggesting that you determine cause of the conditions and if there are treatments for them! While I understand the concerns, that's not thorough doctoring, in my opinion.

And a higher dose of Mestinon isn't necessarily what will work for you. Many people take it more often throughout the day at first. I personally do better on a consistent dose. I am at 90 - 100 mg. every three hours (sometimes sooner) around the clock. HOWEVER, don't change your schedule without speaking to a neuro about it.

Take it easy, okay? I'm really sorry that you didn't have better news. I do okay on only Mestinon, but I don't work (can't) and my life is pretty substandard.

Annie
Annie,
I have fatty liver due to unhealthy diet. My family doctor said that a heathy diet and exersise will help my condition. I do not drink at all. The fatty liver is reversible, but it takes time. I have vitamin D defficiency, and this could be the reason for my bone problem. The thing for me right now is that my MG is getting worse and i really need more than just mestinon. My neuro would not even consider ivig until the condition become really bad, i guess. With the fatty liver, can i still take prednisone? How long before it totally damage my liver? To be honest, i just need 10 years for my daughter to grow up. I do not want to be in a condition like this.
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Old 10-14-2016, 12:50 PM   #15
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Do you have a good internist? I think they should check for other things, such as a thyroid condition (if that hasn't already been done), and other pertinent tests such as Hepatitis. Or have they done that already?

You can't say that your bone condition is due to a D deficiency! I have strong bones and I was deficient for a long time. Please, see an endocrinologist.

There are alternative treatments, but they need to be gone over with a good primary doctor! And a PCP can followup to see how things are going.

I think you may need a PCP to also speak to the neurologist about treatment. There must be a way for you to have further treatment, without hurting your health even more!

If you feel as though you are in an exacerbation or nearing a crisis, you need to be in a hospital receiving that emergency care.

I am truly sorry you are in such a tough position. But I think further testing is warranted.

Annie
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Old 10-15-2016, 01:21 AM   #16
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Quote:
Originally Posted by AnnieB3 View Post
Do you have a good internist? I think they should check for other things, such as a thyroid condition (if that hasn't already been done), and other pertinent tests such as Hepatitis. Or have they done that already?

You can't say that your bone condition is due to a D deficiency! I have strong bones and I was deficient for a long time. Please, see an endocrinologist.

There are alternative treatments, but they need to be gone over with a good primary doctor! And a PCP can followup to see how things are going.

I think you may need a PCP to also speak to the neurologist about treatment. There must be a way for you to have further treatment, without hurting your health even more!

If you feel as though you are in an exacerbation or nearing a crisis, you need to be in a hospital receiving that emergency care.

I am truly sorry you are in such a tough position. But I think further testing is warranted.

Annie
I already had my thyroid and hepatitis checked. They were normal. My neuro said that if my symptoms get worse, then she will consider ivig. Even ivig is not a long term treatment. The worst case scenario, i will just take immunosuppressant drug anyway.
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Old 10-15-2016, 09:44 AM   #17
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In some people with MG, IVIG IS a long-term treatment. It's necessary for them to survive. I know several people who need to do that.

BTW, diabetes and thyroid conditions aren't the only endocrine disease one can have!

Whatever you decide is between you and your doctors. Think carefully, though.

Annie
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Old 10-15-2016, 03:00 PM   #18
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Just had my tooth taken out. It took 1 hour to do so. I ended up sitting for the extraction. The dentist said that this is the first time he has ever done a dental work this way in his 15 years of experience. Anyway the tooth came out. That is a good thing.
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Old 10-20-2016, 01:15 AM   #19
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Why don't they increase your mestinon if that's all they're going to give you?
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Old 10-20-2016, 12:48 PM   #20
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Quote:
Originally Posted by mimc View Post
Why don't they increase your mestinon if that's all they're going to give you?
They did, mimc
From 60mg tp 90 mg 3 times a day!
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