I was just wondering how all of your symptoms are, at their worst? I feel like I am so alone with how bad my Myasthenia is and can get, with even the smallest of flares, I am basically bed ridden and even that is uncomfortable since my back muscles won't work, and my arms wont push me up or help me filp over. And then I have swallowing and breathing problems.

Also how well do you feel at your best while fully medicated? I am currently working my way up the Prednisone ladder, and I'm wondering how well I should expect it to work...

Thank you
Jessica

Jessica, What you said really worried me. You need to call your neuro right away. Do you have one? What meds are you on, only the Pred?

You can get temporarily worse on Pred. When it does kick in, you may feel awesome or you may feel just ok. Everyone is different. What dose are you on?

What you are describing sounds like you are on the verge of a crisis, if not in one. If you can't breathe in well, you need to be in the ER. How close are you to Mt. Sinai? UCLA sucks, sorry, but it does. Unless you have a neuro there who can call ahead to let them know you're coming.

Seriously, the inability to do things with your arms is a HUGE warning sign. Do something and do it right away: Either call your neuro and/or go to the ER.

I hope you will get some help and feel better!!!

Annie

Thanks for your concern...the problem is these are the symptoms I have been having since my son was born, also when I was DX (which is only 2-3 months since the onset of ANY symptoms). With my meds I am ok, but my arms tire within 2-3 minutes of using them, and I start to feel the strain in my diaphram if I am trying to talk and stand at the same time. I read a post the other day describing the symptoms of MG as a kaliedescope (sp), and mine have started changing since the Pred. I just upped my dose to 10mg. I started at 5mg last Tuesday, and have been instructed to up it every week until I get to a dose I want to "try out" for a while. I feel since I started the Pred, like the Mestinon is giving me less relief, also, where it was lasting 4-5 hours on a "normal" day, it's only lasting 3 max, and I'm also maxed out on my Mestinon dose for the day...I have noticed slight improvement since my surgery...I used to get a swollen lumpy feeling in my throat very often, and I just realized I haven't had that in a while...but my major concern, is that I have my infant at home with me all day, and there are times in pretty much everyday, that I can't pick him up from the floor, and get him up to my chest. Also, I am due to return to work next week. I have an awesome work from home job, so I really want to get back to it, but with that and the baby, I need to know what I can expect the Pred to do for me. If I should be feeling back to my old self, then I have a long way to go, but if it will just extend the relief of the Mestinon timespan, or even reduce the weakness a little...I just have want to know how to proceed with my life. My Nuero did say I could go on Disability if I needed to, but I feel like I can get by as long as I have an idea how long till I'm better, or if I'll even get better.
Sorry for such a rant...

Jess

Hi Jess,

I don't see it as a rant, Its good you can talk about it.

I'm a bit concerned about you being told to up your pred dose til you get to a dose you want to "try out" for a while. In my thoughts pred is something that should be closely monitered when you are first put on it. My neuro put me in hospital and started me out on 60mg daily, I was in hospital in case the high dose had a bad effect.
I really feel for you not being able to pick up your baby, it must be so frustrating.

I wish I had more to say, but I'm a bit short on brainpower at the moment, but I'm sure someone will be along soon with some words of wisdom!!
take care
Kate

Jess,

Huge hugs I started the same way, with the birth of my son, I could do nothing, I too would drag him to me as I couldn't lift him. I know how scary this time is for you but take heart, within a year of my thymectomy I was in a drug free remission and was able to raise my children. I am out of remission now due to an accident and just started back on mestinon, I forgot how it was to see without trouble focusing LOL I do not take prednisone as it makes my MG worse {very sensitive to meds}

As for work, I would not go back until you are 100%, remember that taking care of yourself and the baby takes enough out of you, add work to the mix and it is harder. If you have disibility ins. through work I would fill the papers out.

Please feel free to contact me should you want to talk, as I said I understand where you are, as I was the same exact way!

Joanmarie

Jessica,
My heart breaks for what you are going through. I agree with the others about trying to do as little as you possibly can for now. I had a very similar experience when my oldest son was born. It was not MG related as this was over 20 years ago. I was given a Rubella shot when he was born and had a horrible reaction where my whole body hurt for about 2 months. They diagnosed me with Rhumatoid Arthitis and several other things before they figured out it was the shot. I ran a fever of 105* and I was so weak I would crawl across the floor to get anywhere and one day actually passed out on the floor and woke up there a while later. It was so scary and I felt like I was putting my son at risk. I finally broke down and had a friend keep my son for me during the day when my husband was at work so I could just sleep. We were living in Germany at the time because my ex husband was in the Army. Do you have a friend or family member who could take the baby for 2 or 3 hours a day so you can rest? I know how frustrating it is and I am sure the stress of caring for a newborn is adding to your symptoms. Pregnancy and child birth take alot of out of you and even in a perfectly healthy woman it takes a while for the body to feel like you did before. You may already be doing this but I would try and sleep as much as possible, nap when the baby does and let the rest wait. Make sure you take a multi vitamin everyday and try to eat foods rich in vitamins. If you are nursing that is even draining you more and plenty of food and rest will help you build up what the baby is taking. I will pray for you and just try to take it one day at a time. I probably need to take my own advice on that one LOL!!!
Take care,
kendra

Ditto on what Kate said about the Pred. It's not candy and a patient should not be left to up their dose as they "feel" like it, since it takes awhile for Pred to kick in. What if you are getting too much?

I need to ask, why are you on Mestinon Timespan? Why doctors think that is so special, I do not know. Most of the MG experts will NOT give it to patients because it does not give you a consistent dose of Mestinon. Why not take the regular Mestinon?

I'm being a little tough here because you are NOT doing well. And I'm concerned that your doctor is either out of his league, doesn't know what to do or may not know how badly you are doing. I hope you will or have called him.

A 2nd opinion from an MG expert is not a bad idea.

I have dreams sometimes about not being able to hold my dog due to MG, who is a small shih-tzu. If you can't even pick up your child, you are not doing well. Again, I mean close to a crisis not doing well.

Will you please call your neuro and have a conversation about how you are doing? And, to continue to be blunt, working seems like something you cannot handle just yet. You need to give the drugs time to work!

Annie

And what if you have a crisis when you are at home with your child? And you can't talk or move? You not only need help from your neuro but a game plan for the "what ifs" of MG. If you stop breathing, there will be no one to help. I'm not trying to scare you but make you realize that you are in deep trouble right now.

Thanks Annie for putting into words what my poor brain was trying to think of yesterday :-)

About mestinon timespan, it was my saviour for night time. I use to not be able to get out of bed come morningtime, literally, then I started on mestinon timespan at about 9pm and wow what a difference the mornings were. It did mind you make me rather ill in the mornings, but I put up with that, cos I could at least get out of bed.

Kate