Hi joy. My name is Cyndi. I am also newly diagnosed. ( 6 months ago after having symptoms for 4 years). I have a very weak diaphragm that makes breathing difficult, but the mestinon helps a lot. I feel much stronger than I did last spring I also have double vision, swallowing issues and weak legs. I tried prednisone and it made me feel crazy too,and I could not sleep! ( I found that I need a lot of sleep or my symptoms will be worse. ). I switched the prednisone to cellcept which I do much better on. I can sleep! I still have a lot to learn and hopefully will see more improvement with my symptoms. I just wanted you to know that your not alone. Take care

Thank you for replying, I cant sleep at all. I've tried melatonin, benadryl, trazodone... nothing is helping. It's good to know I'm not alone,.. I'm still very scared of it all. If I could sleep even a little I think I would feel a little better. How do you manage your double vision? I haven't been able to drive , it saddens me so much I can't take my children anywhere

Hello my name is Kenneth I to have ocular mg mine came on just like that driving down the road boom they put me on Prednisone which seems to take care of the problem but like you I could not sleep I felt like something was trying to get out of my body all the time I tried many different things what I found that helped the most was NyQuil or ZzzQuil work very well for me and maybe once in awhile smoke a little cannabis that helps as well I've had this mg going on a year I'm not going to lie to you it's not been fun I've had relapse in the summer because of the Heat but everyday you learn a little more about your situation and your body bear in mind that this disease is like having someone else share your body and if it gets pissed off it jumps all over your real self there are many people here that will help you with your issues they certainly helps me I come here every day just to see if anything new is happening right now it seems that I have super high blood pressure and I can't seem to make it go away but like I said the prednisone worked for me and I have cut way back to taking it 20 mags every other day and
seem to be functioning okay I do have a cold and I found a little staph infection on me but that's a minor don't be so scared it gets better even though it seems like it doesn't but it does and you will look back at it as a learning experience good luck I keep us informed we will do our best to help you remember though everyone's difference and their mg is different

Thank you so much, I'm hoping and praying my symptoms subside very soon. How long did it take for the prednisone to work for you ? I've been on it for 13 days now , 40mg a day. I haven't noticed a difference in my eyes. But I sure love hearing that it will get better,..

Hello Joy

Sorry to hear that we have a new member join us, But you're more than welcome. Try reading this for starters

https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/symptoms-causes/syc-20352036

I assume that you are fairly young and perhaps you might just be one of the lucky ones where removal of the Thymus Gland is an option? No doubt you will be evaluated in due course.

It can be very scary in the beginning, but certainly, for the majority of us, it does get better once we have a medication regime, that works, in place.

Hello,
Do you believe the thymus would help even if I had no tumor show ?

Joy

Sorry, way outside my pay grade and as a general rule of thumb, be very careful when you read some of the posts on here, indeed any such forum. At best we can only relate our own experiences and as others have said, on this thread, each one of us is different and MG has got to be one of the most difficult diseases to understand. Most of us make the effort to understand ourselves and truth be told we need to and most neurologists appreciate that. If nothing else it makes for interesting threads on here - enjoy them.

Hi Joy Ken again it took 3 months they first started me on Mastodon. and it did not work they had me try it with combinations seem to have made it worse finally they put me on the prednisone .he told me to go home and take 30 mg Within 3 hours my eyes cleared up my vision came back I had other issues with the prednisone and then when I relapsed because of the Heat in August I had to start at 40 mags again and work my way down and that took about two weeks it had gotten a little better every day all I take is prednisone 20 mag every other day I'm getting ready to go down to 15 what he's thinking of putting me on CellCept or another brand name drug to start getting me down to 5 mg a prednisone and then hopefully remission takes time be patient like I was told here there is light at the end of the tunnel it just can seem to be an awful long tunnel sometimes ...fortunately for me I'm retired and can just lay around and deal with this but I am very active with motorcycles camping things like that I've had to change my lifestyle a little bit but to me it seems like a lot but it's all good nobody knows why we were picked for this disease hopefully we are the ones to find the Cure have a good day because your next day can be better that's how I feel

Hi joy
I can’t give advice on the meds but I can definitely relate to the anxiety of diagnosis. I saw a social worker who really helped me. The three things that helped the most to reduce anxiety was doing deep breathing on the hour every day just 3-5 breaths if you keep doing it your body will eventually learn to relax. Also she had me rearrange pictures and furniture in the room I spent the most time in. This helps reset your brain. And I wore a rubber band on my wrist and when I had a negative thought i had to snap it. It also resets your thinking. To be honest I wasn’t a big believer but keptvwith it and after a few weeks I actually was feeling less anxiety.,hope some of it helps.

Thank you all for sharing with me. Ken I'm so happy for you that your eyes cleared up quickly after prednisone. I'm still waiting but hopeful. The nuerolagist said that should clear up in a week. I'm a mother of 3 and driving is a must. I hope mainly for that right now. & about the anxiety I had to taper off my anxiety meds so that I could take mestinon,.. it's made the symptoms worse for that. All of you have given me so much hope , today was better than any day so far except for my eyes , again. I have a wonderful mom AMD husband that's picked up on many errands for me. I'm thankful for that. Hoping to sleep tonight with a new sleep aid, I'm incredibly exhausted and need sleep. Thank you again, I'm so glad I found this group.

Do the majority of everyone's eyes recover ?

Hi Joy, Cyndi again. I can tell you that my double vision has improved with the mestino n and cellcept. However, I can still get double vision sometimes if I am overtired or didn't rest enough during the day. It's really hard not being able to drive with these symptoms! I feel very undependable making plans etc because I'm fine to drive one day and the next i can't see straight i have understanding friends and family so far and I hope it stays that way.
I'm going to try the deep breathing that was recommended. Stress is a big trigger of my symptoms so I'm always looking for ways to keep it in check.

Hi Joy ,
The vision does get better with medication!
I had my Thymectomy
14 days ago
Mine started with double vision and leg weakness May of 2018
Diagnosed with MG
Mid August
Went to a Neurologist and he started me on mestinon and referred me to a specialist @ University of Kansas Medical Center
They recommended a Thymectomy for me !
Saw my primary care Dr yesterday and my leg muscles have really improved!
I go back to KC next week for check up!
The Doctors said my best chance for remission was this path !
This is a terrible disease!
My Mom had it @ 84 and went into crisis and we lost her 2 years ago
Prayers for you and all who have MG !

Joy,
I did not have a enlarged thymus or tumor.
It looked normal on the ct scan !
Good luck and prayers

Alton,
I looked up the surgery, isn't the cost an outrageous amount? I hope you dont mind me asking. My neurologist told me I would be a good candidate for it as well ,... we are currently looking into it.