[momma3love]

Hi Everyone,
I am a bit of an old timer when it comes to MG. I was dxed at 23 and am now 34. I had a thymectomy at 29. I live in a small town in Oregon. I went to the ER last night and was seen by an older dr who had NEVER treated anyone with MG. Let's just say I have some kind of angel that watches over me cuz his first move was a breathing treatment! Nebulizers make me very weak and shaky. My NIF was no more than 15 after that. And my O2 kept dropping to below 85. He then puts me on O2 and asks for an ABG. Which he said was not too bad. Anyway long story short I did my shut everything else down and breathe super slow, my heart rate usually goes down pretty low too. And then after a bit I feel better. My stats go up and he decides he miraculously cures me. I get sent home with 20 mg of pred every day for 4 days. I am not currently needing treatment for the MG, it has been under control until recently.

In the past I have had IVIG and plasmaphersis, mestinon, preds, and immunosuppressants. I have been quite lucky to avoid the respirator, as I am a bit terrified of that happening. I have been given 5 minutes to improve on more than one occasion. I was dxed with RA about a year ago and have just recently gone off the injections, Enbrel and Humira, for that because I am constantly sick. I think going off all immunos might be the root of this recent change...

My main question is that I always get treated very badly and they never do the right thing. Would it help to have a small binder with pertinent info and what to do if i am in crisis? I have a LOT of allergies and quite a few other auto immune diseases. Do you think the ER drs will look at it? And respect it? Or be even more meanies because of it?

Thanks for any advice!!

[Maggiemayhem]

Originally Posted by momma3love

Hi Everyone,
I am a bit of an old timer when it comes to MG. I was dxed at 23 and am now 34. I had a thymectomy at 29. I live in a small town in Oregon. I went to the ER last night and was seen by an older dr who had NEVER treated anyone with MG. Let's just say I have some kind of angel that watches over me cuz his first move was a breathing treatment! Nebulizers make me very weak and shaky. My NIF was no more than 15 after that. And my O2 kept dropping to below 85. He then puts me on O2 and asks for an ABG. Which he said was not too bad. Anyway long story short I did my shut everything else down and breathe super slow, my heart rate usually goes down pretty low too. And then after a bit I feel better. My stats go up and he decides he miraculously cures me. I get sent home with 20 mg of pred every day for 4 days. I am not currently needing treatment for the MG, it has been under control until recently.

In the past I have had IVIG and plasmaphersis, mestinon, preds, and immunosuppressants. I have been quite lucky to avoid the respirator, as I am a bit terrified of that happening. I have been given 5 minutes to improve on more than one occasion. I was dxed with RA about a year ago and have just recently gone off the injections, Enbrel and Humira, for that because I am constantly sick. I think going off all immunos might be the root of this recent change...

My main question is that I always get treated very badly and they never do the right thing. Would it help to have a small binder with pertinent info and what to do if i am in crisis? I have a LOT of allergies and quite a few other auto immune diseases. Do you think the ER drs will look at it? And respect it? Or be even more meanies because of it?

Thanks for any advice!!

The question is, will the binder be with you during a crisis? I recently purchased a medical alert bracelet. It has a compartment that opens so a detailed list, including treatment options, meds taken, med allergies, names of dr's, insurance info as well as all personal info will easily fit inside. There are many styles to choose from. This solution guarantees that your info is easily accessible at all times.
Good luck to you,
Jan

[momma3love]

Originally Posted by Maggiemayhem

The question is, will the binder be with you during a crisis? I recently purchased a medical alert bracelet. It has a compartment that opens so a detailed list, including treatment options, meds taken, med allergies, names of dr's, insurance info as well as all personal info will easily fit inside. There are many styles to choose from. This solution guarantees that your info is easily accessible at all times.
Good luck to you,
Jan

Thanks Jan. I did not know they made such a thing. I will look into that. I just do not understand why if they have never treated MG they do not do some research or call my specialist first like I had asked him. It is so frustrating.

[cait24]

I experienced the same thing twice in the last week. My emergency treatment was good, but then they just shot me full of steroids, discharged me and the same thing happened again. And now I am even weaker. I am on the wait list for an MG expert at a big teaching hospital.

I suggest finding an MG expert at a large teaching hospital. Hopefully, he can work with your local neuro to educate them on the right treatment plan.

If I have to go the ER again, I am planning to take the 1 hr trip to the large teaching hospital ER to get the proper treatment.

Good luck
kathie

[momma3love]

Hi Kathie
I am so sorry this is happening to you too. I do have a large teaching hospital about 2 hours away. I do see the specialist there who are fairly knowledgeable. But I am not at all a typical case and despite having had a positive Achr once and having an enlarged thymus, which I had removed through surgery, they like to tell me that I do not have MG. I have had negative tests on all other antibodies except the one time, and all emgs are negative. I did have a positive tensilon test this is how I came about the original diagnosis.
Anyways I just do not know what to do. I am definitely still very weak and fatigued. Especially my diaphragm.

[cait24]

I do not think you can be undiagnosed Myasthenia after positive test. You can go into remission. but from your symptoms, you are not in remisission even if the antibodies are not currently positive. Yes, going off the immuno suppressants probably kicked off the MG again. Try this site: http://www.myasthenia.org/Livingwith...Materials.aspx. There is great info to keep on hand. I keep the list of MG bad meds, MG crisis protocool, and The emergency responder info with me always as well as a personal fact sheet of insurance, doctor names and numbers, list of meds and conditions, description of my MG condition and how I want to be treated in emergency: Support respiration, use Bipap and setting before vent and IV steroids. Keep several copies of the paperwork, the ER took all my papers and did not give them back.
Breathing issues are scary. I hope this helps

kathie

[AnnieB3]

I get exhausted even thinking about this topic. It makes me quite angry.

A nebulizer is for asthma. Or if you have a respiratory infection. I take it that you have neither of those things?!! It certainly won't help MG.

What the heck is "not too bad?!" Do you have copies of the ABG? If not, get them.

This is a quote from "Neuromuscular Junction Disorders: Diagnosis and Treatment" by Dr. Matthew N Meriggioli (Univ. of IL), Dr. James F. Howard, Jr.(UNC), and Dr. C. Michel Harper (Mayo).

“Arterial blood gas measurements are a relatively insensitive measure of impending respiratory decompensation in MG since the initial changes are consistent with hyperventilation and are usually attributed to anxiety. By the time CO2 retention occurs, the respiratory muscles have already begun to decompensate.”

In other words, the chest wall muscles are already FAILING at that point. And a NIF at -15 is time for BiPAP or intubation, as you obviously know being an MG vet.

I sound like a broken record, but what you need is a very good pulmonologist. They need to coordinate care WITH a neurologist and come up with a plan for when this happens again. An ER doctor would not dare disagree with a treatment plan already set up. If they did, well, they shouldn't be a doctor, especially not one in an emergency setting!

And you should have an overnight oximetry done. Why? Because your O2 while sleeping could be dropping dangerously low. Hypoxemia is very hard on the heart, brain, and kidneys. You can't only go by how it is while you're awake. Silly doctor.

I'll bet it was, as you said, going off of the other immunos that set you into a crisis. Don't do that again!!! Any drug such as those need to be gone off of slowly, not only Pred.

The only thing you should be concerned with is your health, not an ER doctor's level of misbehavior or ineptitude. And having a neuro and pulmy come up with a plan so that this never happens again.

I'm concerned that you are not stable right now, and anything could send you back into a full blown crisis. Breathing is the main issue, and only a pulmy can help you with that (NOT a neuro).

A two hour trip during an MG crisis is too long! You have to work with the hospital close to you. You can always ask for a transfer and be taken there via an ambulance (with oxygen, etc.).

PLEASE find a good pulmy and get evaluated. And do not overdo. I'm really sorry for what you went through.

Thanks, Kathie, for putting up that info. I see that MGFA is lacking in any substantial pulmonary info though.


Annie