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.

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?