[Jennifer Thompson]

Thank you! I actually think I found a solution for the time being. A hair topper. It’s like a partial wig that goes on top. But I will read what you sent as well Jodi. Thank you.

[Jennifer Thompson]

I will add my story as well. I have overlap conditions as well.

[Jennifer Thompson]

Thank you for all of the responses! I am taking 1/4 tablet at a time… seasonal allergies can confuse what’s going on but I think it’s going ok.

I went from no medications to IVIG and they are trying to get vyvgart approved and now my neuro told me he really thinks Cellcept would help toward remission. I was trying to avoid Cellcept or Imuran.  And I haven’t decided I will take it. But I don’t know I have a choice much.

I know everyone here knows how I feel. It is very humbling to experience MG but I will say there are blessings in the curse.

 

[Jennifer Thompson]

Thank you for the responses:) They are helpful. It sounds like a good decision to try this treatment.

[Jennifer Thompson]

I think my biggest goal is to learn to meet myself where I am at. I am horrible at pushing it. I went from dancing, running and weights to coming home from the hospital in a wheelchair. I am now 8 months later still relying on a cane and a chair for long walking situations. I’ve come a long way and should be more understanding of myself. My nature is the next goal, the next whatever and it has always been physical challenges.

Looking back I can see the years I struggled with MG but the test were negative and I have other autoimmune to make it fun. I need to give myself more grace and walk away from tasks and sit down more. Understand when I can’t lift my plate or wash my hair much less worry about being athletic again it’s ok.

I honestly didn’t know what goals to make for myself because life is so different and I feel like im waiting for the next crisis… one day at a time:)

 

[Jennifer Thompson]

Thank you for so many great replies! I started taking it and began having a reaction of raw burning mouth and throat… like if you stick your hand on a stove but my mouth and throat. So I am waiting to discuss a possible plan B.

[Jennifer Thompson]

Thank you all for your responses they are helpful!

[Jennifer Thompson]

I did speak with neuro and she is taking me off of it. She is putting in for IVIG. Hopefully this works. The Vyvgart worked for sure but the last episode was to bad to keep going for sure.

[Jennifer Thompson]

Hey there! I am on prednisone, mestinon and Vyvgart infusion. It is occurring frequently sometimes daily the last 3 months after my crisis. I was intubated for 4 days.

[Jennifer Thompson]

What manufacturer did you switch to? I wonder how many there are…

[Jennifer Thompson]

Marcie, I to had similar issue with the mestinon tablets. Do you have the same side effects from the liquid?

[Jennifer Thompson]

Thank you for your reply! Very helpful and reassuring. I figured I would have more added down the road. I have my EMG next month. I am thankful for all the information available here.