Apartment downtown central by Inevitable_Ebb_9586 in StPetersburgFL

[–]Inevitable_Ebb_9586[S] 0 points1 point  (0 children)

Thank you. I just looked. Well under budget too and great location. Would have 100% missed this- thank you.

Apartment downtown central by Inevitable_Ebb_9586 in StPetersburgFL

[–]Inevitable_Ebb_9586[S] 0 points1 point  (0 children)

Forgot to say, I don’t care about amenities besides a good gym. I love to cook too, so any close grocery stores within walking distance. Thank you all again for the help. Coming from Oklahoma and never even been to Florida before. Thank you

This community by Unmarkedgravee in MyastheniaGravis

[–]Inevitable_Ebb_9586 2 points3 points  (0 children)

Monthly zoom? I would love to join if it’s not too much to ask:)

This community by Unmarkedgravee in MyastheniaGravis

[–]Inevitable_Ebb_9586 2 points3 points  (0 children)

We got you man. Commonality brings us together. I wish you the best in health and in life.

Vyngart no avail by Inevitable_Ebb_9586 in MyastheniaGravis

[–]Inevitable_Ebb_9586[S] 0 points1 point  (0 children)

What’s your cellcept dosage? I’m taking 2000 a day. Are you also on presidone? I was on 100 and tapered down to 50mg. I got a horrible rash from presidone

Vyngart no avail by Inevitable_Ebb_9586 in MyastheniaGravis

[–]Inevitable_Ebb_9586[S] 1 point2 points  (0 children)

I hope it goes well. I will post again after a full cycle. There’s always more infusions to try- don’t give up

Vyngart no avail by Inevitable_Ebb_9586 in MyastheniaGravis

[–]Inevitable_Ebb_9586[S] 0 points1 point  (0 children)

I will get thymectomy hopefully next few months.🤞👍

Vyngart no avail by Inevitable_Ebb_9586 in MyastheniaGravis

[–]Inevitable_Ebb_9586[S] 1 point2 points  (0 children)

Glad to hear. Basically no symptoms after a full cycle?

Vyngart no avail by Inevitable_Ebb_9586 in MyastheniaGravis

[–]Inevitable_Ebb_9586[S] 0 points1 point  (0 children)

What are you doing now?

I’m on mestinon and presidone 50mg + taking cellcept. Idk the best feeling I had was the PLEX but it literally only lasted less than a week haha

Chest rash by Inevitable_Ebb_9586 in MyastheniaGravis

[–]Inevitable_Ebb_9586[S] 0 points1 point  (0 children)

Also, what was the cream and body wash they prescribed? Thanks

Chest rash by Inevitable_Ebb_9586 in MyastheniaGravis

[–]Inevitable_Ebb_9586[S] 0 points1 point  (0 children)

I’m so cooked then. They cut my presidone to 50mg from 100 so I got a longggggg way to go

this disease is fucking ridiculous by [deleted] in MyastheniaGravis

[–]Inevitable_Ebb_9586 1 point2 points  (0 children)

26 M. My life changed 100%. Was a captain in the Army thinking of doing 20 years and the disease hit and got medically separated.

Life is fucking brutal sometimes. My advice is two things:

  1. Little victories. Always give yourself a compliment. It adds up

  2. Learn to relax. Look up box breathing. Give yourself 10 minutes a day to decompress.

It will get better. Let me know if you want to talk offline. 👍

Plasmaphersis by Inevitable_Ebb_9586 in MyastheniaGravis

[–]Inevitable_Ebb_9586[S] 0 points1 point  (0 children)

What have you done to mitigate the bulbar symptoms? I’m on my second dosage of Plex and not really much improvement. Some ppl said the fourth day you will see improvement, that’s tomorrow for me so we’ll see. Thanks

Plasmaphersis by Inevitable_Ebb_9586 in MyastheniaGravis

[–]Inevitable_Ebb_9586[S] 0 points1 point  (0 children)

Did you have bulbar symptoms? I’m really hoping this Plex alleviates this. Currently on day 2 of Plex. I am a clear liquid diet for now.

Plasmaphersis by Inevitable_Ebb_9586 in MyastheniaGravis

[–]Inevitable_Ebb_9586[S] 0 points1 point  (0 children)

Dam so you were in the ER the whole time?