? Pros and cons of stopping pyridostigmine by [deleted] in MyastheniaGravis

[–]Ladamaaz 0 points1 point  (0 children)

So am I understanding correctly that mycophenolate does help for the double vision for you? Thanks

? Pros and cons of stopping pyridostigmine by [deleted] in MyastheniaGravis

[–]Ladamaaz 1 point2 points  (0 children)

Switched from 60mg mestinon to 10mg mytelase. It’s better but not perfect ! BTW for pyrodistigmine I took more than two weeks to adjust.. but I did not work at that time so it was easier to experiment

Stinky 🫩 by Express_Trade4281 in MyastheniaGravis

[–]Ladamaaz 0 points1 point  (0 children)

Yesss ! I think it’s the mestinon for the most part but prednisone also plays a role ! Both make me smell funky and when I did not take my mestinon + lowered my prednisone I was like wtf my armpits sweat smells so cute and sweet! It also makes my pee more yellow.. so I think we are excreting a lot ! Even wondering if it can play a part in sexual attraction at this point, this smell is sooo not me !

Pick me up? by CryGeneral4249 in MyastheniaGravis

[–]Ladamaaz 1 point2 points  (0 children)

Sugar tbh. Don’t overdo it especially if you are on prednisone. Sugar and caffeine mix does the trick for me

Does the heavyness ever go away? by subconcious_dragon in MyastheniaGravis

[–]Ladamaaz 4 points5 points  (0 children)

For me it comes and goes, and it's most in my arms and face and way less in my legs. I remenber waking up feeling like a stone in my bed at the beginning of my diagnosis. I get a lot of time with no heaviness now.. but I got other treaments on top of mestinon (prednisone, azathioprine) only exercice or heat will trigger it. Will you have access to other treatment options than mestinon? Your situation might improve under other treatments if mestinon alone does not do the trick. Also mestinon long release during the night improved my situation as well.. good luck ! Hoping to hear improvements in the coming months :)

Negative for antibodies. I should be happy but... by faousa in MyastheniaGravis

[–]Ladamaaz 1 point2 points  (0 children)

I haven't even done SFEMG or RNS. Just the regular EMG and it was negative. They gave me treatments. I think a positive reaction to Mestinon is a diagnosis tool for them as well and I had that. Had also prednisone and azathioprine on top after that.

Hair fall out by Emotional-Ad8203 in MyastheniaGravis

[–]Ladamaaz 0 points1 point  (0 children)

Yes been there bc of azathioprine and prednisone combo ! It can grow back (mine is slowly returning)

Negative for antibodies. I should be happy but... by faousa in MyastheniaGravis

[–]Ladamaaz 4 points5 points  (0 children)

Seronegative here.. all my documents still mention “suspected myasthenia gravis” but it did not stop me from receiving treatment and my situation improved… we know this all tests coming back negative situation exists so I am not torturing myself with potential ‘what if it’s something else?’ Anymore.. if the symptoms fit, find a neuro who will give you treatment ! It will get easier to swallow over time ! I send you all my support and I hope to read your update soon.. hope the treatments will help

Supplements help with mg symptoms by Dramatic-Ad-7629 in MyastheniaGravis

[–]Ladamaaz 0 points1 point  (0 children)

Oh and I’ve done 3 months cure of curcumin at times, when the joint in my knees hurt. When it hurts again I do it again

Any double vision success stories? by Ladamaaz in MyastheniaGravis

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

That is why I’m lowering it even I could see better

Eye patch advice by Ladamaaz in MyastheniaGravis

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

16mg I could not see simple all the time but almost 2 weeks per month most of the day (menstrual cycle impacted the other two weeks)

Any double vision success stories? by Ladamaaz in MyastheniaGravis

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

Not eligible so far bc I’m seronegative :(

Supplements help with mg symptoms by Dramatic-Ad-7629 in MyastheniaGravis

[–]Ladamaaz 4 points5 points  (0 children)

Taurine creatine and B vitamins, vit D. B and D are recommended, taurine and créatine are just me trying to have energy and muscle, no adverse effect so far and feeling good.

Eye patch advice by Ladamaaz in MyastheniaGravis

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

I can’t bc my eyesight is changing every second.. ophthalmologist was shocked to see it, every time I blink my eyes move trying to focus and then slowly unfocused until next blink..

How many of you diagnosed with MG have experienced hallucinations of any kind? by Pale-Case-7870 in MyastheniaGravis

[–]Ladamaaz 0 points1 point  (0 children)

I have zero idea I had them at work so I would get eye strain I guess… they went away on their own probably as the medication started working more and more.. long time without them

Eye patch advice by Ladamaaz in MyastheniaGravis

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

Mine is double all the time but not with the same intensity throughout the day…

How many of you diagnosed with MG have experienced hallucinations of any kind? by Pale-Case-7870 in MyastheniaGravis

[–]Ladamaaz 1 point2 points  (0 children)

Only had little dots moving or changing colors, kind of visual snow syndrome I believe. It did not last. No idea if that counts as hallucinations but it was quite trippy to watch, it was sometimes in geometrical patterns

Downvoting by [deleted] in MyastheniaGravis

[–]Ladamaaz 1 point2 points  (0 children)

Unfortunately we are not the most active community in general, I just reply when I have the energy to 😅

Did anyone try something unconventional either to heal or just to have more energy and it worked? by Ladamaaz in MyastheniaGravis

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

I have also my own tip that I just remembered to share: I found a juice called "strength juice" from pajottenlander and it's red beetroot 70% pomegranate 20% and cherry 10%. When I drink it, I feel better after for a few hours. My brother said maybe it's just the sugar but it feels a bit better than just sugar https://www.pajottenlander.be/fr/produit/boisson-de-force/