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
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)
Mestinon did not help and starting IVIG infusions Soon. Has anybody had it and how was the first week?
Mestinon works for me but ONLY in conjunction with regular PLEX Treatment. IVIG almost killed me as it caused a pulmonary embolism event in a person with life history of anemia and blood NOT clotting problems. It also put me in a wheelchair, but perhaps you'll have waaaaay better results as SO VERY MANY others who obviously weren't me. BTW, I've been the anomaly most if not all of my life, and that may have tainted my results. Be blessed, and stay strong. 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.
Yes
Yes. Mestinon helps me as I know the other meds aren’t approved when you are SN. I do wonder whether other meds would show great improvement over mestinon?
Sometimes things have worked quite successfully off label. I pray your specialist or team aquires the necessary knowledge and is/ are not afraid to think outside the box or blow up the box when necessary. When life is on the line there is NEVER an acceptable loss.
