John Ulfelder

I take a wide range of supplements daily. I also take various medications for my MG (prednisone and mestinon) as well as for other health conditions (e.g. statin, blood pressure medication, medication for my enlarged prostate, etc.). I stopped taking magnesium when I learend it might further weaken the muscles affected by MG. Based on what I am…[Read more]

I was diagnosed with bulbar MG a year ago. My symptoms were ptosis (droopy eyelids), which affect my vision (difficulty reading, with balance while walking, and unable to drive). No other weaknesses (legs, arms, breathing difficulty, etc.). Initially I was unable to chew and swallow, was hospitalized and had a feeding tube inserted (wonderful…[Read more]

Ptosis (drooping eyelids), They seriously interfere with my vision and are not responding to medication. Can’t drive safely. Have to be careful when walking.

While I was in the hospital with my initial MG symptoms the hospital neurologists followed the book. They advised me as to what they were doing &  why,  but not much about options unless a particular approach wasn’t working.Once I was released my out-patient neurologist has been very inclusive of me in discussion about medication, treatment opt…[Read more]

My MG came on rapidly early in 2921. My two key symptoms were severe ptosis (droopy eyelids) interfering with my sight and difficulty swallowing. Initially I went to my opthomologist because of my eyelid problem. When I discussed my situation and symptoms with the new doctor in the practice se immediately zeroed in on the possibility of MG and…[Read more]

I am currently taking 25 mgs daily of prednisone along with 60 mg of pyridostigmine BR (mestinon) 4 times daily for my MG. I have regained my swallow function and have had my feeding tube removed. However, I still have severe ptosis (drooping eyelids) but no other symptoms of MG (e.g. muscle weakness or pain in arms or legs). The prednisone is…[Read more]

Based on the advice of my primary care physician (PCP) on went to the local hispital emeregency room due to mt to key symptoms; I could not eat or swallow (even my saliva) and my eyelids were drooping badly and interfering with my vision. She and my opthamologist both correctly diagnosed MG as did the hospital. I was admitted and spent 4 and one…[Read more]

I had my double Moderna rDNA vaccination in January and February at the local Fairfax County ealth Department offices. Had a sore arm for two days; no other side effects. Since I am on prednisone, I went to a Harris Teeter pharmacy for a Moderna booster (same dosage as each of the original shots) several weeks ago as soon as they were available.…[Read more]

I stopped my 81 mg aspirin cold turkey. No need to taper it like prednisone. It helped reduce the rate if bleeding and volume of blood. Right now the open sores on my arms and legs have stopped bleeding and are starting to heal (scabbing over). Hopefully now that I am on a lower dose of prednisone (20 mg) it may be less of a problem. But still not…[Read more]

I started in prednisone this spring at 30 mg. My main side effect has been skin thinning, bruised and bleeding arme and legs. I was also taking an 81 mg aspirin daily prescribed by my cardeologist. I stopped it to try and help with the bleeding. It has helped. My neurologist also reduced my prednisone to 25 mg the3n to 20 mg. However, at 20 mg my…[Read more]

I received my initial Moderna vaccinations in January and February. I subsequently had IVig treatment for my MG (no particular improvement) followed by 7 plasmapharisis treatments (also no particular improvement). I was concerned that the treatments to reduce the MG anti-bodies may also have weakend the effects of the COVID-19 vaccine. I,…[Read more]

Since I was hospitalized for the onset of my MG in March, 2021, I have not had anything alcoholic to drink. Currently I am taking both mestinon and prednisone for my MG. Although I was a regular drinker before MG (beer, wine and liquor) I  have no desire for alcohol at the moment and based on the comments I am reading I should stay away from it!

I am new to MG. It began for me in early March. My  neurologist prescribed 30  MB’s of prednisone  daily along with Mestinon. I started having bruising on my arms and legs, occasionally one would bleed. My neurologist dropped the daily dose to 25 MGH. Still having bruising and bleeding problems  but no other problems.

Fortunately I have several extended family members who work in the field of medicine & have an understanding of MG and an appreciation of what I am going through. With others I have to provide a fair amount of information and updates on my condition & treatment  Biggest misconception is that MG is not generally ‘curable”and is a lifetime dise…[Read more]

I am not experiencing any pain with my MG. I have been able, however, to regain my swallowing function and remove my feeding tube after extended work with a speech/swallow therapist post-hospitalization. I still have droopy eyelids that interfere with my vision and restrict my ability to do certain things such as driving. Is there any evidence…[Read more]

I have only showered not bathed since my initial MG diagnosis. Even though I like I t hot,I’ve not had any problems I’m aware of. My neurologist has advised me that heat is the enemy of MG. As a result, I’ve not taken any hot baths or used our sauna, nor returned to workouts at the gym. I do miss them.

I’m not really jealous of others.. I’m just discouraged that I can’t do some of the things I could do or not do them as well as I could before MG. Makes some basic things slower. Have to string tasks out step-by-step.

I showed up at the emergency room with drooping eyelids and inability to swallow ;iquids or solids (not even my own saliva) but no weakness in my feet, legs, arms or hands. Immediately suspected myasthenia gravis. Started me on mestadon but it didn’t help my symptoms. Blood tests for anti-bodies for MG and Miller-Fisher Syndrome were negative, CT…[Read more]

I had 5 IVIG treatments as an in-patient shortly after my initial diagnosis of MG, in part because the prescribed mastedone was not making any difference in my MG symptoms, drooping eyelids and difficulty swallowing. I had no side effects from the IVIG treatment, but no real improvement in my symptoms. They followed the IVIG treatment with 7…[Read more]