[Sharon White]

I have ocular myasthenia gravis, blepharospasms and dystonic tremors. The spasms and myasthenia seem to fight against each other. I do get Botox every 3 months that really controls the spasms. I have glasses that have a special made crutch in them that holds my eyelids open. (World optics) has been modifying glasses for over 50 years adding a crutch to them. It works. Are they painful? Yes. Does it take a while to get use to them? Yes. Do they work? Yes! I need both Botox to control the spasms and take the pressure off my head above my eyes and I also take mestinin and wear these special glasses. I have had ocular myasthenia gravis, for about 15 years.

[Amy Cessina]

Kind of judgmental to say cosmetic procedures are unnecessary in comment one. This is supposed to be a support group. People have cosmetic for other reasons besides vanity. I had to get my naval area and underlying muscle fixed due to large hernia after three pregnancies. A plastic surgeon did it to minimize scarring. I did not have any increase in symptoms. I’ve had non invasive treatments such as facial peels and I also had very painful spider veins on my legs treated. I had filler on my face which I didn’t like at all was not worth it. None caused any issues. My neurologist says the non invasive procedures I had done don’t affect the muscles.

[Jodi Enders]

Agreed, Amy. I have removed the comment. We appreciate you sharing your experience! It is very encouraging for others who need procedures that you had no bad reactions
– Jodi, Team Member

 

[Gina]

I am going to have derma fillers next month — I have a very deep crease on one side of mouth because of droopy mg face.. I believe it’s restylene..

[Debbie sandwra]

Anything done to a body with MG is crazy. I had a skin cancer removed with numbing and an incision and now my eye is drooping and back to double vision. Our bodies do not like stress. I take vyvgart infusions. They help sometimes but not always. So be careful with what you put into your body.

 

[Delia Hernandez]

Injectable cosmetic fillers contain different substances, including hyaluronic acid, and are used to smooth, plump and tighten the skin. However, the use of fillers in MG patients requires careful consideration by a medical practitioner. Because MG affects the muscles, it may be challenging to determine the precise location and injection depth of fillers, raising the risks of overcorrection, complications, or adverse reactions.

Therefore, it is recommended that patients with MG seek advice from experienced medical practitioners who specialize in treating MG and facial rejuvenation. Medical practitioners can help patients create individualized treatment plans that meet their aesthetic goals while minimizing any potential risks or complications. In conclusion, the usage of cosmetic fill

[Lise]

Before I was dialing gott fillers and some Botox. I would never do it now because if they hit a nerve or a muscle it could ruin my face. Also the NP that is to inject me refuses to do it in case of hurting me. She did say fillers aren’t so dangerous

[Renna]

Before I was diagnosed with MG, I had a doctor use botox to stop my right eye from tiring and constant blepharospasm.  It helped a little but a few months later I was diagnosed with MG by another neurologist with an EMG test.  I was told I should not get botox as I’m already experiencing muscle weakness and botox could cause adverse reactions facially.  My MG affects my legs, walking and balance as well as shortness of breath and difficulty swallowing, so it is not facial nor ocular but the doctor said to avoid botox and I’ll have to live with the bothersome blepharospasm in my eye.

[Leslie]

I am questioning whether it is safe to have “miconeedeling” done on my face. I have ocular MG. I have had fillers in the lower face with no reactions.

[Kimberly Johnson]

Following because I’d be interested to find something we can actually safely use. I know we aren’t supposed to use Botox. I don’t personally know anyone who has used it to know what it actually would do.