Muscle and nerve doctor
 

I emailed my neuro couple days ago about my symptoms which have been getting worse. Whether i need aditional treatment beside mestinon. And this is her response
"Please follow up, if you wish I can also shceuled you with our Specialist on muscle and nerve. Steroids,thymectomy, IVIG or plasmapharesis during exacerbations are used. However, Mestinon is the main drug used."

Muscle and nerve specialist? What kind of doctor is this? I thought a neurologist handle muscle and nerve.

It can help to see a neuromuscular specialist (that is the nerve and muscle specialist that your doctor mentioned). These are neurologists who have done extra training in diagnosing and treating disorders like myasthenia gravis. Regular neurologists can help, but patients are often referred to a neuromuscular specialist to get input and care. If your condition is getting worse, this other doctor may be able to suggest other treatments that will help. Mestinon is a good medication, but you may need more than that, and perhaps they will recommend that and help monitor it.

Take care,
Erin

Thanks alot Erin for the information

Is this the new "line" that is out there among neurologists? That Mestinon is the only drug necessary to treat MG unless we're in a crisis? Is this due to the one lawsuit when someone didn't have MG and they gave someone an immunosuppressant? Talk about an overreaction.

I've personally heard this recently as well. If this is the new stance of neurologists, then we are in trouble, guys.

If Mestinon is all a MG patient needs, then CoQ10 is all a cancer patient needs.

A muscle and nerve specialist is a neurologist. She probably meant a MG expert.

It sounds as though you aren't doing well, so it IS time for more treatments. Again, if you become so bad that you can't breathe, swallow, or move well, you need to be in an ER. Are you that bad now?

I thought they already had a plan in place for you. If not, I hope they will very soon!

Annie

I was in ER 3 weeks ago. The ER doctor ordered some test for my heart, lung and blood test. Everything came out normal. Then he sent me home. I've still been having breathing problem since the ER visit. But it is not that serious to be in ER. I also have weakness in my arms and legs. But still they are not that bad yet. I have tooth infection that need to be extracted. I asked my neuro about it. She said Local anesthesia is ok for people with MG, and it is ok to have it done. I will have my tooth extracted this saturday. Still, there are some hesitations in my mind whether to have it done or not. It seems like my neuro does not know alot about MG.

Infection...
 

The tooth infection has your immune system ramped up. In this state, the production of offending antibodies is increased, and an increase in severity of symptoms/impairment is a consequence. Were you given an antibiotic for the infection? There are antibiotics that we as MGers must be wary of. Please be sure any antibiotic you take is safe for those with MG. Please ask your dentist which anesthetic he will be using and be sure you know which are safe for MGers, and which are not. patrick123

For antibiotic, as far as i know penacillin is safe. I do not know which anesthenic is safe for MG to be honest. My neuro said that all Local anesthesia are safe. Since my symptom seems to be getting worse, i do not know if it is a good idea to have it done now.

I'm with Patrick123. The problem with the tooth is making the mg worse. As your immune system ramps up to try and handle the infection, it also makes more T-cells that make the mg worse. If you get the infection taken care of, it can only help the mg. As far as local anesthesia, I had a root canal done with 2 sessions of local anesthesia and had no problems. I don't recall the exact drug used, but my research indicated that there were no specific local anesthesia that would aggravate the mg.

Good luck with the extraction and hopefully, it will help with the mg.

ttmmkk001, You were just diagnosed with MG. The risk of having an exacerbation or crisis before adequate treatment is higher.

Yes, having the tooth out and taking care of the bacteria are important things to do. But that doesn't necessarily mean that your MG will be magically better afterward. The infection may be making your MG worse, but your MG is making you worse.

Xylocaine tends to wear off more quickly after a procedure than Lidocaine. It might help reduce adverse reactions. Talk to your dentist about that. It doesn't take long at all for an extraction.

The risk of a newly diagnosed MG patient worsening is fairly high. Take as good care of yourself as you can. Sleep more than usual. Seek out care in the ER if you need to.

MG can become worse slowly and you may not realize how badly you are doing. It's best to be checked by a doctor with a clinical exam, pulmonary function tests, arterial blood gas, etc.

I want to add that caution because you are newly diagnosed. I hope everything goes well.

Annie

Juanitad, what antibiotic did you take when you had root canal?

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.

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!

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.

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.

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

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.

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!

I went as high as 180mg 6 times day or every 4hrs when I was in my worst part of my crisis I'm now down to Slow Release "SR" 180 twice a day or e every 12hrs and trying to get off PlasmaPherisis after 82 treatments, I have to get it done weekly. I finally got off Preds but still on 200mg of Imuran daily...

I'm now going back to IvIg to try to get off PlasmaPherisis, I'm finding it very harsh on my body, I'm having a lot of muscles and joints PAIN and my Doc thinks it could be the plasma exchange having secondary effects so I'm hoping that IvIg will help to bring the pain down a bit...

If all this keeps up I might make the BIG move and do a STEM CELL treatment in the new year this can't go on for ever!!! My Specialist has cured 8 out of 8 patients so far, I did speak to 2 of them and feel great, no more needs for medications nor any types of treatment!!!!!!!

I'm just to big of a CHICKEN to do it!

I feel sorry for what u have been through, Snoel! How are you doing now? Are u able to work? Drive?

Hi ttmmkk001,

Thanks for your concern, when my friends and other people see me they all say how good and well I look, I have to say I do feel great and back to work 5 days a week for 30hrs +/- and do pretty well all I want, I had to learn or reprogram myself to my capabilities, I'd have to say that I'm back to 85% to what I was.

I've been very lucky not to fall back into a CRISIS so far like I said I listen to my body.i do push myself a lot over my limits then take a stance back for a few days, I want my body to build up strength and it seems to work!!! It's just I can't get away from my PlasmaPherisis otherwise i feel great that's what's keeping a float right now but for how much longer???? I'm still young at 53 soon so if STEM CELL good bring back in REMISSION I'd be a happy camper.

It's been a week since the extraction. Still a lot of pain. I just went to the dentist office. He confirmed that i have a dry socket. It seems like everything is going wrong at the moment.

Just look at the bright side it could be a lot worse...take it one day at the time and try not to panic or get to anxious it makes things a lot WORSE! especially if you think you might have MG, try to relax and take it in small strides...it took me a while to slow things down and feel much better, anxiety can play some weird tricks on you.

Thanks Snoel!

Go rent a good movie and order in a good pizza and enjoy...as we're speaking I'm doing IVIG I'm on my last bottle should be done around 4:30 o make sure you have the Pizza on time, I'll be right over!;)

If you said so