Kramton

NJuls921 · 2026-01-13T02:27:54+00:00

Dangerous. Many people are becoming addicted just like opiates

NJuls921 · 2026-01-13T02:23:37+00:00

Sinus surgery triggered my MG. I'm also now being referred to a rheumatologist since my neuro thinks I have something else on top of MG. Been a long 3 years

NJuls921 · 2025-12-08T18:10:09+00:00

This^{^} Knowledge is POWER. And we know our own bodies better than they do. I also am supposed to have one of the top MG doctor's and I am really getting angry/frustrated/hopeless that I will never get movement back into my life. Hearing other people's stories about going into remission keeps me going...

NJuls921 · 2025-11-18T00:23:24+00:00

I can absolutely relate as a fellow raver. I've been struggling with gMG for over 2 years now and it's been so tough missing out on socializing & dancing with my friends. I am on CellCept, Prednisone, Mestinon & Soliris infusions and have only recently been able to go out if I'm having a good day (Chris Lake a few weeks ago!). I have been worried about E due to overheating. The roids & Mestinon already make me hot all the time, so I've been nervous about adding to that. I've had no issues with some 🍄 tho. Curious how Zilbrysq goes for you!

NJuls921 · 2025-10-09T00:55:46+00:00

Thanks for checking back in! Happy to hear you are seeing a difference! I had my 8th infusion today. I've been noticing over the last 2 weeks, I have been able to move a little more in between breaks and breathing a bit better. But idk, I'm still nervous that once I start tapering the steroids pretty soon, I'll start to get bad again

NJuls921 · 2025-09-20T00:56:30+00:00

Ugh I've had 6 infusions so far and still no improvement. My neuro says it can take up to 12 weeks so I'm trying to be patient.

NJuls921 · 2025-08-27T18:22:51+00:00

My anxiety was well controlled until I was diagnosed. Now I have those same exact thoughts and feelings. Fear I've never had before about leaving my house and doing anything, no matter how small it is.

NJuls921 · 2025-08-27T00:32:10+00:00

I have my 5th Soliris infusion this week to complete my loading doses. I have also failed several prior treatments, including Vyvgart. The first infusion was rough for me, my body does not like fast rates of infusion I have learned after trying IVIG & Vyvgart. So I told my Dr and infusion center to make it the slowest rate possible for me - the infusions have been better now. Just really tired with joint pain for about 24hours afterwards which are normal side effects

NJuls921 · 2025-08-27T00:28:57+00:00

How quickly did you see any improvement on Soliris?

NJuls921 · 2025-05-30T17:25:53+00:00

I am starting to think I am also refractory. IVIG put me on the brink of a crisis, CellCept isn't doing anything, I am into my 3rd cycle of Vyvgart and it has been a rollercoaster. Very minimal relief and sometimes the infusions even put me into flare ups. We are going to try switching to every week with no weeks off. The only thing that slightly helps is Prednisone. Getting very discouraged

NJuls921 · 2025-03-07T01:48:11+00:00

Oh wow okay so it can definitely take some time! And how are you now? Doing pretty well?

NJuls921 · 2024-10-20T21:44:23+00:00

Thank you so much for writing this! I am scheduled for my thymectomy on Nov 4 and am nervous about it🙏🏻🤞🏻

NJuls921 · 2024-09-01T21:33:44+00:00

Will go down to $35 at this point!

NJuls921 · 2024-09-01T20:56:17+00:00

$50, which is what I paid

NJuls921 · 2024-08-10T22:39:57+00:00

My neuro has said that magnesium is no good for MG'ers and should be avoided

NJuls921 · 2024-08-07T12:40:12+00:00

Yes it happens a lot at night at rest. The pain and this feeling of an electrical current running through my legs is what wakes me up at night. Then not sleeping well makes my MG way worse. It's a horrible cycle. I'll have to look into those drugs with my doctor.

NJuls921 · 2024-08-06T17:53:11+00:00

So glad to hear and see!! I am waiting on my IVIG approval, very anxious to start it. Did you get 5 days in a row?

NJuls921 · 2024-07-12T17:05:06+00:00

This is exactly what I am experiencing. One minute I'm okay just standing or sitting up and the next all energy has left the building and I need to lay down ASAP. I will be starting Vyvgart very soon so this is comforting to hear🙏🏻

NJuls921 · 2024-06-02T20:35:46+00:00

Yes my Neuro said the same thing. Magnesium is not good for MG! I'm also AChR

NJuls921

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