Do You Have Seronegative Myasthenia Gravis? What Treatment Has Improved Your Symptoms Best?
Are you diagnosed with seronegative MG?
Which treatments have you been approved for? Which have you tried?
Which form of treatment offered you the most improvement, and what doses?
- Jodi, Team Member
My Dr offered IVIG for my first treatment and only gave a few days of help initially even after increasing frequency twice every 2 weeks. Now adding Mestinon but not much improvement and will be on a Mestinon max dose next week and will keep trying with IVIG for a few more weeks but I’m afraid will need other meds.
I have SN. Is anyone having pain? I haven’t found a treatment that really works. I am always so tired.
I have seen many people comment about the pain that they are experiencing with MG.
I found this article that discusses alternative ways that may help reduce pain.
https://myasthenia-gravis.com/clinical/holistic-therapies-for-pain
Chelley (Team Member)yes! It’s a burning pain like when your leg muscles are exhausted from climbing stairs. Get it in legs, arms, shoulders and chest. Goes away with rest but it does not take much exertion to bring it in. Also neck hurting all the time now but it’s not burning just a bad ache. Lidocaine patches helps this a lot. Have only tried IVIG and Mestinon with little long lasting help so far
Mestinon did not help and starting IVIG infusions Soon. Has anybody had it and how was the first week?
Hi, my symptoms are double vision, getting off balance frequently when I walk, weaker muscles with feeling of a tingling/ pain in arms, shoulder and legs when they are extra tired.
I have had two series of infusions 4 and getting another one of 3 days this week. The only improvement I noticed is the tingling/pain is gone for 2-3 weeks so we are going to change the frequency of the infusions from 4 weeks to 3. Still hoping it will help more but if this keeps the symptoms from getting worse without needing medication and their side effects; that could be good.IVIG gave me a mild heart attack so that made IVIG a no go for me.
Yes
