[angell]

I'm a bit better now... just got off the phone with a friend. I've never made a call like this before. Hurting so bad...unending pain and not the strength to shake it off and get in front of it. Needed to cry.

Doctor told me last visit that there are five stages of MG and I'm only a two or three so I'm not that bad. That's been renting a lot of space in my head lately - more than I care to admit.

Can't take more than 60 mg of mestinon without overdose symptoms and I don't feel any relief from 60 mg. So, doctor started me on presdnisone. 20mg for a week, then 40mg for another week, the 60mg with the idea of increasing mestinon along with it. I'm at the tail end of the second week and I finally put it together...the debilitating abdominal cramps are the steroids. So I called this morning. "Go back down to 20mg of prednisone."

I waited. Put it off as long as I could...the pain hit two hours ago. Feels like my guts are being wrenched out. Body shaking...muscles can't shake anymore. Fatigue. Sweating. Stools show evidence of bleeding. "Just go back down to 20mg..."

I've had three heart attacks. Been at work each time. Finished my shift and then drove myself to the hospital each time. I'm a tough sob...and this has me on my knees... but I'm "only a two or three; it's not that bad."

I'll be fine...but I'm not now. Just needed to check in with some folks that might get it. Thanks for being here.

[AnnieB3]

Angell, With some evidence of blood in your stool, you need to check into an ER. Sorry, but that's the deal. Don't mess with a potential internal bleed.

Pred might not be a drug for you. And, if not, the sooner you get off of it and onto one that will work for you, the better.

My Dad had a GI bleed from Pred, and you do not want to go through surgery. It wasn't a pleasant experience for any of us.

PLEASE, seek out help at the ER! The other reason is that you have signs of an adrenal crisis (pain, sweating, and fatigue are all classic signs). They are BOTH life threatening, damn it!!! Didn't your doc know the signs of that one?

This is yet another case of someone going down from a Pred dose too quickly and having an adrenal crisis.

You'll also want to check in with an endocrinologist after you've been off of the Pred for a while so that they can check your adrenal function. Maybe it's already low or something else is going on.

You know, drugs are okay, but some just aren't meant for certain people. And it's not worth risking your life to have them.

I really hope you'll be okay, and that you can revisit all of this with your neuro. They blindly follow that algorithm, Mestinon first, Pred second, etc.

What else can I say, but be smart! Well, you are smart, but that doesn't always mean acting smart. Don't push that physical envelope and get a LOT of rest and TLC.

Please let us know how you're doing! We can talk about the sadness of having MG some other time!!!


Annie

BTW, I've had my adrenal function tank. It's not fun. I sought out help right away, as should you (per my endo!). Mine was jet lag induced—yours is more serious.

[cait24]

Angel, so sorry you are going through this. The first time I was on high dose prednisone was wonderful. No side effects, I had loads of energy and I was out weeding the garden. This time when I am on high dose prednisone was the exact opposite experience. I am sick to the very bone - muscle and bone pain, migraines, leg swelling, a week of rectal bleeding, constant diarrhea, nausea 24/7, and the MG is no better. I can barely function. I have weened down to 30 mg from 80 and the symptoms have barely improved. I can not take the meds anymore. I am going to wean off prednisone and never go on it again. I have been out on disibility 2 months and feel like I will never be able to work again. I will have another round of IVIG in a few weeks, hopefully that will help.

You should call your primary care physician too. You may be able to get some meds to counter the effects of the prednisone and get a referral to a GI doc. The abdominal bleed needs to be evaluated and treated ASAP. Sometimes the meds are worse than the disease. It is a balancing act.

40 to 20 mg of prednisone was probably too fast. Did your primary or neuro tell you this? Weaning off prednisone is usually much slower for MGers. Every time I step down, I feel really bad the first few days and then the symptoms subside. This happens at every step down for me, A lot of people just can't tolerate the prednisone. Weaning off prednisone is hell for me, worse than MG.

Hope you feel better soon.
kathie

[angell]

Originally Posted by AnnieB3

Angell, With some evidence of blood in your stool, you need to check into an ER. Sorry, but that's the deal. Don't mess with a potential internal bleed.

Annie, clearly you missed the part of my post where I pointed out that I've had three heart attacks. Been at work each time. Finished my shift and then drove myself to the hospital each time. Check into the ER...

Originally Posted by AnnieB3

Pred might not be a drug for you. And, if not, the sooner you get off of it and onto one that will work for you, the better.

The neuro isn't interested in getting me off it. Right now I'm back down to 20mg - here's a prescription for omeprazole to help with the stomach cramps. Don't kill the messenger okay...just telling you what he said.

Originally Posted by AnnieB3

PLEASE, seek out help at the ER! The other reason is that you have signs of an adrenal crisis (pain, sweating, and fatigue are all classic signs). They are BOTH life threatening, damn it!!! Didn't your doc know the signs of that one?

It is possible that he was skipping that particular class to hang out with the cool kids from the high school down the street from Yale.

Originally Posted by AnnieB3

You'll also want to check in with an endocrinologist after you've been off of the Pred for a while so that they can check your adrenal function. Maybe it's already low or something else is going on.

THIS I will do. And I wouldn't have had you not suggested it. So can I have some points back for not going to the ER? Please...

Originally Posted by AnnieB3

What else can I say, but be smart! Well, you are smart, but that doesn't always mean acting smart. Don't push that physical envelope and get a LOT of rest and TLC.

My dad tells me (lovingly) all the time, "You're not a regular dummy; you're overqualified."

Originally Posted by AnnieB3

Please let us know how you're doing! We can talk about the sadness of having MG some other time!!!


Annie

I'm doing much better. There were other issues going on that I did not mention - not on purpose, just not clear headed enough at the time. The MG affects my back muscles and with back problems already (spinal stenosis, crushed discs, etc.), there is a good deal of pain near constantly anyway.

Then my stomach cramped, seized, tore, or whateveritdid like it had every day for the last five or six days, but this time it felt like the cramps themselves were on steroids...which I guess they technically were. Within ten minutes of me doubling over for the first time, the migraine hit. Ten minutes later my incisor abscessed.

Too much, too fast. Typically, I can use meditation to 'get in front of the pain' but I was completely taken unaware.

One question, if you don't mind: The neurodoc said there were five stages of MG and I am a two or three. For the life of me, I can't find the five stages explained anywhere. Have you heard of them or is he making an arbitrary statement based on his beliefs about the disease?

On a positive doctor report note: My PCP has been honest with me from the beginning that he doesn't know near enough about this disease to be able to do me much good, but that he will be trying to get more versed. Well, he just came back from two weeks vacation and reported that he read three books on MG and scores of medical journal articles while on vacation and, "While I certainly don't know everything by a long shot, I feel a lot more confident moving forward with you on this now."

Good for him. Good for both of us.

hugs and love,

Angel

[angell]

Originally Posted by cait24

40 to 20 mg of prednisone was probably too fast. Did your primary or neuro tell you this?

Neurodoc's orders.

So sorry you went through you ordeal with prednisone. Wish none of us did but am grateful for the info.

huggles,

Angel

[AnnieB3]

You can have as many points as you wish!

Here is the Osserman Classification of Myasthenia Gravis.

http://emedicine.medscape.com/article/1171206-overview

The Myasthenia Gravis Foundation of America Clinical Classification divides MG into 5 main classes and several subclasses[3] :

Class I: Any ocular muscle weakness; may have weakness of eye closure; all other muscle strength is normal.

Class II: Mild weakness affecting other than ocular muscles; may also have ocular muscle weakness of any severity.

Class IIa: Predominantly affecting limb, axial muscles, or both; may also have lesser involvement of oropharyngeal muscles.

Class IIb: Predominantly affecting oropharyngeal, respiratory muscles, or both; may also have lesser or equal involvement of limb, axial muscles, or both.

Class III: Moderate weakness affecting other than ocular muscles; may also have ocular muscle weakness of any severity.

Class IIIa: Predominantly affecting limb, axial muscles, or both; may also have lesser involvement of oropharyngeal muscles.

Class IIIb: Predominantly affecting oropharyngeal, respiratory muscles, or both; may also have lesser or equal involvement of limb, axial muscles, or both.

Class IV: Severe weakness affecting other than ocular muscles; may also have ocular muscle weakness of any severity.

Class IVa: Predominantly affecting limb, axial muscles, or both; may also have lesser involvement of oropharyngeal muscles.

Class IVb: Predominantly affecting oropharyngeal, respiratory muscles, or both; may also have lesser or equal involvement of limb, axial muscles, or both; use of a feeding tube without intubation.

Class V: Defined by the need for intubation, with or without mechanical ventilation, except when used during routine postoperative management.

As you can see, there are subclasses within the II - IV classes above! So which subclass are you? This is used as an overall classification of how your MG is doing, not any particular muscle group or muscle strength.

When a doctor evaluates a patient for their level of muscle strength, they often list it as 3/5, for example. That is not the same "list of 5" as the above one. When I had my MG crisis, I was a 2/5. 5/5 is the best you can be, 1/5 the worst. They "rate" each muscle area (i.e., legs) or give an overall listing. When I had my crisis, I couldn't open my eyes, lift my limbs, or breathe well. To the dismay of my doctors, my speaking muscles had been spared.

The problem with this algorithm is that MG fluctuates. A MG patient can be a 1/5 in the morning and, if they're out in the heat doing things, they can progress to a 4/5 by afternoon. It all depends on how they are overall (stable or not), and many other factors such as what drugs they're on or what other conditions they have. And if you use your arms a lot, for example, they might be 2/5 while your legs are 4/5.

No, I didn't miss the stupid part where you drove to the hospital! 911 is always best in those potentially life threatening situations. What . . . are you of Norwegian ancestry (as I am)? I should temper that by saying that I've been known to drive myself in when I probably shouldn't have, too.

You should know that a drop in adrenal function can affect the heart. Your history is exactly why I was so adamant about you going to the ER! I'm sorry you've had 3 heart attacks. I hope you won't have another.

But that brings up another point. When MG gets worse, the heart beats harder to get us oxygen. The pulse will go up. When the heart can't get enough oxygen to the body, the oxygen saturation goes down. It might be a good idea for you to buy an oximeter, so that you can monitor how you're doing. Also, a pulmonologist can assess your O2 overnight (at home) to see if any apnea (from MG or not) is being hard on your heart, too.

Kudos to your primary doctor!!! How cool is that? I LOVE when doctors want to learn more. It shows a real dedication to the craft of doctoring.

While on Pred, you should take calcium and vitamin D (at the same time). Or do you already? Also, krill, flax, fish or any other omega is a good idea to take daily, too, especially with stomach issues. Omegas keep the gel coating of the stomach healthy and can help prevent bleed issues. Pred is an anti-prostaglandin, which is why good prostaglandins (omegas) are good to take.

I highly suggest a physical therapist. They can help you get any knots out of your back muscles, so some ultrasonic massage, and give you other tips to keep it as good as possible. Now that I know what to do, I can deal with it at home. I grind into those damn knots as soon as possible. With pain, it's always best to deal with it right away. A long-handled, electric massager is great to have around!

Do you have migraines on a regular basis?

As far as the to-be-expected grieving process after getting a disease goes, allow yourself to feel whatever "stage" of grief you're feeling. I don't think I will ever reach the "acceptance" stage because MG is our constant companion.

What can help to get through living with MG is to set yourself up for success in all aspects of your life. You already got a new place, which is great. You have good docs. You're smart, curious, and are asking good questions. You can go to www.myasthenia.org to get more info or just bug us.

You can reevaluate your environment to see if there are things you can do there (childproof it so that you don't trip, etc.). Sit when you can (i.e., shower while sitting). Cool off right away if you are hot. Know that socializing is probably the most draining activity you can do (uses a lot of muscle groups at once). See a psychologist if necessary to vent (really helps). And so many other things.

Whatever you do, don't pooh-pooh any new symptoms, like doctors tend to do. And don't assume they're MG-related.

Okay, that's a lot more than what you asked for. I hope all of that helps. What else can we all tell you about MG?



Annie