u/Massive-Eagle-5465

As the caption says, how long until you were healed after onset? Time in between, undiagnosed included.

Has anyone healed their dizziness with RFA? Or had RFA which helped? My doctor suggested it as it looks to be a nerve causing my dizziness since a nerve block made it dissapear.

I basically realised 1 week ago that these debilitating symptoms are probably CV. I have most symptoms other users describe;

- non spinning dizziness
- lightheaded all the time 24/7 the longer I’m upright
- gets better with massage, wearing a neck pillow
- had one nerve block which cured me for 24h
- no rocking or swaying, no screen sensitivity but it gets worse in supermarkets or when I walk
- extreme neck weakness ie. I have absolutely 0 neck muscle
- neck pain and tightness
- visual blurriness and floaters
- hearing issues

Now the only thing I’m wondering is do anyone’s symptoms completely dissapear when lying down? It’s the only thing that’s ever reliably helped me. When my neck is resting the symptoms dissapear. But I’ve seen that others are also symptomatic when lying down? Does this mean it’s not cervicogenic dizziness? My doctor said he sees many patients that experience complete resolution of symptoms while lying down because their neck is no longer being worked all the time and there’s no pressure on the proprioceptive system but Im curious to hear of others experiences.

I got rituximab 2 months ago, I have gMG ACHR+ and I’m really getting a bit bummed out reading all these things online of it not being effective for us, having bad results or just flat out not doing anything. Has anyone even had good experiences with it? I’m actually questioning why my neurologist even prescribed it if it’s supposedly so ineffective….

Maybe I’m also just also being overly negative because I’m frustrated that it seems to not really be working yet, ie. Fatigue, neck weakness are still super bad for me.

Any positive experiences would be highly appreciated !

It’s been 4 weeks and I finally feel a bit better but I can’t tell if I’m just getting out of my flare from a month ago or if it’s actually doing something. I’m ACHR positive, I know that can be relevant to the medication’s effect. Experiences highly appreciated !!

Hey, my MG is mainly generalized, don’t really get a ton of vision problems but I’ve realized that I often have blurry vision, or my eyes will produce double vision when they relax but I can always pull them back into focus. This leads me to believing I may have had this for much longer but have always compensated for it. However, from what I understood, true MG related diplopia can’t just be fixed by forcing the eyes to refocus. So my question for those with ocular symptoms: what is diplopia like for you? Does what I have sound like MG or just general exhaustion? Thanks in advance !

As the title says :) newbie to this community, been ordering reps from the same factory for many years though. Just recently stumbled across this community and realised there’s a whole ecosystem!! So excited. I’ve been desperately looking for a Balenciaga brogues city everywhere but haven’t been able to find it. Anyone have any leads to a seller?

As the title says :) curious about the medication regimen most people are on. I’ve had IVIG once before and regularly take Mestinon. I had a thymectomy and ever since then I’ve been seemingly fine with just Mestinon.

My doctors had planned Rituximab and/or subcutaneous IVIG. I’m just not sure I need it? Obviously I am aware I’ll need to discuss this with my doctors, not Reddit. I’m merely curious about others experiences :)

Are there any people here that have done fine with a thymectomy and Mestinon?

Apologies if this is confusing, I was only diagnosed a couple months ago so I’m quite new to dealing with this illness…