First Steps at Treatment

Scott_S · 03-11-2012, 02:57 PM

Quote:

Originally Posted by 4-eyes

Hi,

Scott, have you tried prednisone? That usually works very quickly and can be good to get on board while choosing another, slower acting immunosuppressor. Since your symptoms are mostly bulbar and ocular, do you have MuSK MG? If so, that is more difficult to treat and requires slightly different treatment.

Good luck...keep searching for answers!

Thanks for the reply. My symptoms are almost all speech and eating/swallowing related. No problem with eye lids, but my eyes do 'tire' (burn) from time to time.

Prednisone has helped, but I still experience speech problems in my job about ever other day or so. Eating is often a chore, not a pleasure.

My Neuro never mentioned MuSK MG, so I guess I don't have that. I think he know what I had from the start, but one of the confirmations was the presence of MG specific antibodies in a blood test.

Scott_S · 03-11-2012, 02:59 PM

Quote:

Originally Posted by Stellatum

I also wanted to say: you are near the beginning of this disease, and especially early on, it can change and surprise you. You need to understand that MG can tank really quickly. If you have any trouble breathing, or symptoms that are severe or getting quickly worse, that is an emergency. You have to get to the ER right away, or call an ambulance.

Abby

Thanks for the reminder. My symptoms seem so minor compared to many of you that I'd be shocked to have a crisis but I guess it could happen. After 3 days of IVIG I was feeling really crappy and twice I noticed I had short, rapid, shallow breathing that went away after an hour or less.

Brennan068 · 03-12-2012, 05:34 PM

Hi Scott,

As you're aware, you're really early into the diagnosis and solution here. Don't jump from one thing to the other, you'll mess yourself up more.

Have you had an MRI / CATscan of your thymus? --- is there a reason for your developing the condition?

As far as treatment goes, work closely with your neuro and gp. You may want plex / IVIG but if they want imuno suppressants you may be better off going that route.

I hope things work out for you and you can get this managed well and quickly.

Brian.

Scott_S · 03-12-2012, 09:09 PM

Quote:

Originally Posted by Brennan068

Hi Scott,

As you're aware, you're really early into the diagnosis and solution here. Don't jump from one thing to the other, you'll mess yourself up more.

Have you had an MRI / CATscan of your thymus? --- is there a reason for your developing the condition?

As far as treatment goes, work closely with your neuro and gp. You may want plex / IVIG but if they want imuno suppressants you may be better off going that route.

I hope things work out for you and you can get this managed well and quickly.

Brian.

Thanks for the response and advice. Yes we did CT Scan and MRI of my brain and my thymus. I'm 60 and my thymus was normal.

Just waiting to something to happen I guess and a bit anxious. Thanks again.

bu452000 · 03-13-2012, 08:34 AM

Quote:

Originally Posted by Scott_S

I had not thought of taking more often than six hours. That might help me. Maybe 30 mg every 4 hours instead of 60 every 6 hours.

I have found 30mg every four hours works best for me, more than that proved too much. Currently on prednisone and mestinon as I had major MG attack in december. Hopefully will be off the prednisone soon, raised my blood pressure and the drug just scares me.

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