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 recently,within the last 2 months, been diagnosed with sn Myasthenia. My neurologist is not incredibly helpful as far information and with what to expect next with treatment. He started me on Mestinon for the 1st month,and it helped some,but now he has added a steroid taper where I'm go i up 10mg a week until I hit 60mg,then I will decrease by 10mg a week until I'm off of it. After that, I have no idea what the plan is. He seems to just want to keep me in the dark,and I'm frustrated. Most of the info I have learned about the disease has been from resources from places like here,and a few others,not from my neurologist. I also have Ankylosing Spondylitis,and fibromyalgia, so I'm dealing with those issues as well. My biggest issues from the myasthenia are severe swallowing trouble,weakness in arms,legs and neck(I can barely hold my head up), and breathing issues. Monday I go in for an endoscopy, and I have an appointment with an endocrinologist next week because I have a large nodule on my thyroid and my thyroid blood tests are not good. Are the thyroid issues tied to the myasthenia? These are questions I wish my neurologist would answer,but he just pushes it off and tells me we can discuss it at a different appointment... Everything is "We can discuss that at a later time". Sorry for the word vomit, I'm just so incredibly lost with this. Thank you for making it this far,and for any help and advice for treatment abs what I should be asking about.
It is really dangerous! I have to do things like brush my teeth before I eat just to try and lessen the chance of bacteria getting in my lungs. I have multiple exercises from my speech therapist that I have to do when eating, one is holding my breath before I swallow every single time, because it helps to tighten my vocal chords and close off that side, and other things that seem just as ridiculous but I do them because I don't want pneumonia. My Endoscopy is early Monday morning and I'm really hoping it gives us more answers or hopefully a fix!🤞 Thank you so much! I will take all of the prayers I can get! I also wish that my Dr's had paid closer attention and tested me for autoimmune diseases so much earlier! It would have saved me from a ton of pain and damage! I am currently on extended and immediate release morphine daily, among a laundry list of other meds like Lyrica, etc, for the pain and nerve pain. I get RFA in my neck and back,too. It's just a lot. I feel for anyone with any of these diseases. We all deserve to be treated much better! It's so true what you said about the Dr's using steroids,and other things,to "get the patients out of their hair". So many Dr's just want to push us off to either someone else, or until the next appointment.
I wish you well,and I'm sending you lots of good vibes!!
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.
