Amy

Hello, I just was diagnosed with Covid Aug.25th, neg. home test, but positive PCR test. I knew I was sick, becase I was woken from a sound sleep by a screaming headache with a very sore throat. I have had all my vacinations and booster, but was considered high risk for Covid complications or death so I was given the monoclonal antibody…[Read more]

Paul, Immediately, after atarting Mestinon I could actually pick up my legs, prior to that I was shuffling my feet and had to use my arms to lift my legs to get into the car. I didnt notice my eyes right away because I have been wearing prisms to correct the double vision for 5 years. Unfortunately my eyes still fluctuate. My body tells me when…[Read more]

Hey Carol, i see this thread is running twice. I got an appointment with the neuro-team at Mayo in Rochester in Early Sept. They know I am seronegative/Sfemg+ and thank the Lord Mestinon actually works for me with no side effects. Unfortunately I am taking it every 4 hours 24 hours a day. I just recently was given a 180 mg ER Pyridostigmine…[Read more]

Hi Alice, my situation is similar to Mary’s. I have multiple autoimmune diseases, Sjogrens, Hashimoto’s, Raynauds, gluten intolerance (probably celiacs). I have been gluten free for many years so it is hard to tell now without a colon biopsy. I also am seronegative and have a positive SFEMG test. My double vision and droopy eyelids were the fir…[Read more]

Hello, I have a blood clotting disorder and was told by both my hematologist and my neurologist that I absolutely can not have IVIG. I have had a couple of DVT’s and a PE. I had to take Lovenox injections for 6 months, I was extremely disappointed since it appears to be a treatment that has been fairly successful for a number of MG folks on t…[Read more]

Hi Dave,

I am so glad Soliris is working for you. I believe it is a very good drug.  It did stop my brothers immune system from attacking his blood cells, but he got the drug too late.  He had another rare illnes, A Typical Hemolytic Uremic Syndrome. It took a long time and two hospitals to finally come up with a treatment plan. By the time t…[Read more]

Hi Dave, i believe you might be the first person to mention Solaris.  How many infusions of solaris did you have?  Did you do plex at the same time?  Did it help with any particular MG symptom?  You didnt say how long ago you took it, but I am wondering if the manufacturer is still helping patients cover the cost.  I had a younger brother on Sola…[Read more]

Hi Norm & Alan,  I was surprised by my sleep apnea test, particularily because I rarely snore.  I have had breathing problems for a couple of years, but only when I exercise or over-exert myself.  I saw a pulmonologist who had me walk the halls with an O2 meter on my finger.  My Oxygen would drop into the 80’s, the alarm would go off, but once…[Read more]

Hi Cynthia,  Are you taking the potassium and magnesium for muscle cramps?  I wondered about Magnesium since I thought it was on the use with caution list for MG.  I use both a topical oil and a vitamin B complex that have Magnesium.  It has been the only thing to stop the awful cramps I get.  Walking it off never seems to help.  The worse ones…[Read more]

Thanks Dave,  I currently am taking 360 mg daily.  90 mg 4 times a day, i am pretty sure I need to take it while I sleep at night because of my breathing.  To avoid having to get up during the night I want to try the XR tablet. My insurance does cover it but, it is a top tier drug and will cost me about $2 a pill.  Which isn’t too bad.  I have p…[Read more]

Absolutely, I just started pool therapy, one on one with a therapist. The pool was too warm for me. When I got out of the pool, my legs felt like jello and I was completely exhausted after only 40 minutes. I am pretty sure it was a combination of the exercise and the heat since the same thing happens if I take a hot shower while just sitting on…[Read more]

Hi Lisa,  you are Seronegative, there are still many neurologists out there that still believe Seronegative MG doesn’t exist.   There are a fair number of us out there that are positive with other gold standard MG tests who I believe either. produce too small number of antibodies to be detected or a completely different antibody that they don…[Read more]

Hi Scott – I received my 4th Covid vaccination March 2nd. My 3rd shot was the end of Sept. i am lucky to have a very proactive primary care physician. The first 3 shots were Pfizer the 4th was Moderna I didn’t really react much to the pfizer vaccinations other than a sore arm with the 3rd booster. The 4th Mederna vaccine actually made me f…[Read more]

Yes Bravo Alan,

Thank you for reminding me to look for the positive and live the best life I can.  Some days it is just harder than others.  Yesterday was just one of those days.  Amy

Hi Alan,  you are absolutely right about the tinnitus.  I barely notice it in the morning, but by the afternoon if I am tired it is a dull hissing sound that just gets louder as the evening wears on.  Just like my eyesight.  I just can’t read anymore in the evening.  I have no control over my double vision, even with prisms.  My Mestinon lasts m…[Read more]