Debra, the duration of the Pred taper depends on how much and how long you've been taking Pred. If you took Pred for more than a month and at doses over 50 mg/day, the length of the taper could take several months. I went from 75 mg/d to 5 in 18 months…
See http://neuromuscular.wustl.edu/mtime/mgrx.html
Maurice.

ok. . .well, i was supposed to stop pred in 2 days and today i started having trouble. or more like the insurance case worker called and was ****** the neuro still had not responded and helped with everything! then she asked how i was doing and i have been choking more in the last week and today after talking and eating a salad for lunch i had trouble speaking. it was like my tongue was fat and slow and stupid and i couldn't control it properly. so i stopped speaking for about 1 1/2 hours and then it got better. i am stronger so i thought i was okay but she called the doctor i saw in the hospital for more pred and he called me immediately to see what was going on. he said he didn't think he needed to hospitalize me just yet but to go up to 40 mg of pred for the next week and mash my food and get into see the neuro now so they can figure out what to do. he freaked me out. i mean, i've been out of the hospital a week and no one has done a thing and then bam! i find out that this was some kind of impt thing. why didn't someone tell me what to what for? what are the warning signs? i was just watching my breathing. . .

Debra, I can't say that I'm surprised.

Your doctors have dropped the ball in a HUGE way. Post-crisis doctoring is a must. And with MG, any of the 640 skeletal muscles can get worse, not only the breathing muscles. If you get worse, go back to the ER right away.

You have some responsibility too, not just the doctors. You have to stop doing things, like going out. You have to basically do very little or risk going into a crisis again. Physical therapy was not a good thing to do right now. And you need to go back in if you are worse.

You barely have a diagnosis, just had a crisis and your doctor is out of town. Or is he back? Call their office tomorrow and say that you absolutely need to be seen BY ANYONE tomorrow to discuss all of this. Doctors are notoriously bad at giving more than the basics of what to do. If you can't get help there, go to urgent care or the ER.

You need answers. That tongue thing is classic MG. If I talk to much, my tongue will even cramp up.

Warning signs for MG are breathing getting suddenly worse or so bad that you can't take a breath in or out or both; inability to swallow; inability to use any muscle at all or a generalized weakening (like not being able to lift your leg off of the couch).

The problem is that so many people don't know a lot about MG and don't know how to advise you!!! So trust your instincts and if you get worse, go back in.

I hope you will feel better.

Annie

Debra, I stopped eating salad when I realized that it wasn't worth the effort of chewing and swallowing...
At some periods of time, you have also to consider that swallowing and talking are two actions which use the same group of muscles. You may have to refrain from talking while eating...
Maurice.

yes, i totally am realizing how badly this has been going and i am so happy that the case worker set everything in motion. i was getting nowhere. i have an appt with the neuromuscular expert tomorrow and everyone is aware of what has happened now. i feel a bit better today on the higher pred but i am aware i am not out of the woods by a long shot.

annie, the neuro ordered pt for me every day in the hospital and they came to me and now that i am home they came to my home. i really have taken it easy and stayed home but i am not going to do any more exercises after reading what you wrote until i hear from the doctor about all of this tomorrow. i really need the rest. and my tongue does too. good idea maurice.

all the websites are so general and am am truly getting my best info on here with you all so thank you sooooooooooooooo much!!!!!!!!!

debra

They did the "PT" thing with me too, though not at home. I realize that they want to keep your muscles from atrophying but the bigger issue is keeping you from another crisis. If doing PT is making you worse, which it would since MG gets worse upon exertion, then you need to tell your neuro that. Not moving around can lead to atrophy, sore muscles from lying on them too much, atelectasis or a blood clot but you are in a recovery period right now. There are things you can do like move your legs and arms or go for short walks, all by yourself. Or use your incentive spirometer a couple of times a day (once each time) or whatever the doctor and you decide. When someone comes to your house, there is the inevitable talking. Some doctors do not get how even a little talking can tank both your swallowing and breathing muscles.

Try sipping on some cold water in between bites of food too. Did they say to take calcium with vitamin D while on Pred? Flax or fish oil?

Doctors can only do so much. I'm glad you are trying to learn more about MG and what you need to do to manage it. It will probably take you a while to figure it all out. So go easy on yourself and your doctors. Work with them to find out what works for you. And, BTW, going up to 40 mg. is a pretty big jump in Pred since you were on a taper.

Annie

Yes, I'm taking calcium, D3, and fish oil.

Went to neuro finally. . .Pt is out for now. He is really starting over with my case since this is the first he has seen of me. He says I am very complicated with all the vestiblular issues and now the medications kicking up a bunch of issues, very tricky. So he wants to think on it a lot. My weakness is more asymmetrical so that is throwing him off too but my migraines, Meniere's Disease, and adenomyosis also were not caught by docs because they presented outside the norm. sigh. . .

I got totally motion sick in the car and I walked like I was drunk and with Parkinson's Disease or something and with no balance whatsoever. He said my walk wasn't very mg but I told him it was not how I normally walk and I think it was the drive and my Meniere's Disease issues. So that was a mess.

But in the meantime, he wants to run more bloodwork in that mestinon is not totally specific for just this neuromuscular disease but many and he wants to do an EMG on my face, neck, and shoulder and a repetitive stimulation test that for some reason was not done the first time when I had my EMG. This does not sound fun, especially since he wants me off mestinon 24 hours but will take 12 hours and I have NO idea what effect that is going to have on me. He did not say I need to be off the pred for the test so breathing/swallowing should be okay, right?

He is reducing the pred to 30mg today as he thinks I'll be okay on it since it worked in the hospital and I'm having issues he thinks may be caused by the pred and he changed the mestinon to 60mg 4xday to make it a bit easier on me.

He will send me to UCSD for a sfemg if he learns nothing from all of this other stuff. . .

debra

I am doing better on the change in meds I am happy to report. No choking or swallowing problems and my strength is pretty darn good on the mestinon.

What should I expect going off the mestinon for the EMG? Just limb weakness or something more? I hear I can stay on the pred so. . .

Also, my smile seems to be drooping on one side today. . .is this just another new symptom or is this of particular concern?

Thanks, debra

Debra, Good, I'm glad you had a face to face with a neuro. What the MG experts, whom I have asked about the Mestinon helping "other" diseases, have said is that it may help any "normal" person feel a bit stronger on low doses but it does not improve something like fatigable ptosis if you don't have MG, LEMS or CMS. It can temporarily help ALS but not always. That's why a thorough clinical exam and history (differential) are so key to diagnosing MG. Fatigable weakness is so unique to MG/LEMS/CMS (some of them).

Have you spoken to an endocrinologist about the adenomyosis?

Migraines can have LOTS of causes, including foods. Have you watched your diet and physical conditions closely before having one? MSG is a huge trigger and it is naturally occurring in things like tomatoes and cheese. When my head/neck muscles get weak, I can get a killer headache though it's more of a tension type headache. I used to get migraines but do not anymore after taking out all additives and not having certain foods. I've eaten a whole foods diet since 1997 and it really helps.

Some people can have an inflammatory response to dairy. I should know since I just had to give it up. I was having a cough/inflammatory reaction in my lungs (possibly elsewhere like my GI tract) every single time I even had a bite or drink of anything dairy. Eggs, dairy and soy tend to have inflammatory effects in the body. That can screw up your inner ears!

Some docs think that adenomyosis is an inflammatory response. So I'm wondering . . . have your doctors tested your CPK (creatine phosphokinase)? Any arthritis anywhere? Have they checked your c-reactive protein? Sometimes the "auxiliary" immune system, like c-reactive protein, fibrinogen, erythyrocyte sedimentation rate, etc. can kick in when there is unchecked inflammation or allergy in the body.

Well, your neuro would be wrong about not being off of Pred for the SFEMG. Completely and utterly wrong. I know of more than one person who has had it while on and off. Normal while on it, and abnormal when off. The whole point of having Pred is to suppress the immune system that creates antibodies. It should make someone with MG feel more normal. It skews the SFEMG test results, as does Mestinon, nightshade foods and caffeine. Did they mention being off of any caffeine 48 hours before the testing too?

Have you ever consulted with an endocrinologist? Just curious. I imagine you've had a brain MRI, right?

I hope you get answers soon. That's the worst part, not knowing exactly what is causing you to feel so bad. And end up in the ER not being able to move or breathe! If you get worse, please do go back in. That's more important than any damn test.

Annie

i am still trying to get my medical records so i don't know about all the tests. i have had 4 brain MRIs and a spinal now too.

i had my uterus removed last year due to severe bleeds. and the migraines are controlled with meds currently but thanks for the great idea. i'll add them to my list to watch.

i am having an EMG not an sfemg 1st. not sure that makes a difference but they are doing face, shoulder and neck and repetitive stimulation. sfemg is not yet scheduled. they did not mention caffeine or nightshade foods, just no lotions and oils but i was planning on being off a good 27 hours. i will get a 3 day migraine if i go any longer though. . .

that really concerns me about the pred but it's clear i was having major issues with swallowing/choking/speaking and initiating urination on 10 mg so i really don't know what the heck to do and when i mentioned the meds he just said mestinon for 24 hours but he would take 12. he said if it is abnormal then we know and if it's not we kinda won't be totally sure then i guess but what can i do?????

that is really interesting about what the mestinon will work on. so maybe that is what he is testing me for? something was anti-glutamic acid. what is CMS? congenital myasthenic?

debra