[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 reading I will be adding calcium to my daily supplements. I am 81 and was preliminarily diagnosed with MG a year ago. Couldn’t chew, couldn’t swallow and my eyelids were drooping badly and interfering with my vision. Had a feeding tube installed in my abdomen. After being released from the hospital and the rehab hospital, received further therapy at home. Regained chewing and swallowing functions, tube was remioved. Eat and drink whatever I want (no alcohol since last March. liver feels better!).My ptosis, drooping eyelids, has not improved. No problems with weakness in arms or legs, or difficulty breathing. My diagnosis is preliminary because none of the blood tests confirmed the presence of any MG related anti-bodies. My EMG tests were also negative. Am planning on getting a second opinion concerning my diagnosis and treatment at the Mayo Clinic in Minnesota. My current neurologist is quite supportive of my intention. He is a smart and personable doctor who I think is quite open and would welcome having another doctor or doctors looking at my situation and trying to figure out what is best for me.

[John Ulfelder]

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 goop!) I lost 42 pounds. Due to swallow and speech therapy I regained my swallowing and eating functions. I now can eat and drink anything I choose. I have regained 14 pounds and my cardeologist is quite happy with my current lower weight and urged me to continue to maintain it. So far so good.

[John Ulfelder]

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.

[John Ulfelder]

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 options and has shared his thinking about my overall situation & prognosis.  A welcome change.

[John Ulfelder]

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 advised me to see a neurologist immediately. I then discussed it with my primary care physician (PCP) and she also zeroed in on the possibility of MG and advised me to go to the emergency room at the local hospital, which also has a large and experienced neurology department. Went to the emergency room, was admitted based on a preliminary diagnosis of MG. Started me on mestinon and sent me home. My condition worsened (mestinon not helping), couldn’t eat or swallow (not even my own saliva). Readmitted, ended up with feeding tube first through nose down throat and then surgically inserted through abdomen into stomach. In hospital for four and one half weeks then rehab hospital for two and one half weeks. Sent home for further recovery and out patient rehab. Also regular appointments with neurologist and ongoing adjustments to medication (prednisone & mestinon). Swallow function returned with exercise. Feeding tube removed. Able to eat and drink everything.

My point is that my local, day-to-day medical practitioners picked up on the possibility of MG immediately and gave me good advise as to how to proceed (get neurological help asap). Perhaps it was because I live in a large metropolitan area loaded with highly trained and skilled medical personnel. Nor did I experience any weakness in my limbs. My symptoms were very clear and focused on my eyelids and throat (no confusion there). What is referred to as bulbar MG.

[John Ulfelder]

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 playng hell with my arms and legs with significant bruising below the surface of the skin that sometimes breaks out into open, bleeding patches of skin. My neurologist has suggested I consider CellCept as an alternative to prednisone. It, however, takes 6 to 9 months to become fully effective and I would have to remain on prednisone until I can be weaned off it. Plus monthly blood tests to check my white cell count and immune system (and always the possibility of having to stop the CellCept based on blood test results). In addition, it makes you more susceptible to certain cancers such as lymphoma and skin cancer. In my case I have a history of basal cell carcinoma (skin cancer) with a number of biopsys and spot removals. This, of course, gives me pause for thought before starting CellCept. One question might be whether or not CellCept is more effective for certain MG symptoms — in my case, ptosis. I don’t have an answer to that question yet nor does my neurologist. Still seeking, still healing, still moving forward.

[John Ulfelder]

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 half weeks in the hospital. I then spent anther two and one half weeks in the rehab hospital in order to get me on my feet abd ready for living at home. We worked hard on trying to regain my swallowing function and I was being fed and medicated by a tube in my nose for a week or two nd then through a tube directly in to my stomach. Fortunately, I regained my swallow function, got back to a normal diet and the tube was removed (now a nice scar)  5 months after its surgical insertion. My ptosis (droopy eyelids) have not improved and I am being counseled to have patience while I continue medication for my MG.  The hospital stay was not restful or pleasant. Nurses and the aides are overworked and underpaid. Not pleasant for anyone especially when you need assistance to go to the bathroom in the middle of the night.

My advice, two key points. First, everyone confined to a hospital bed needs someone to act as their advocate/ombudsman. You can’t do it effectively while you are ill and subject to the control of the doctors and staff. They need to stay on top of your treatment options and overall care, ask questions and explore options, push for best treatment, and generally be supportive. Frankly, it is a daily responsibility with little time off. My spouse did it for me and I aware of how much of a difference it made for me. Second, despite feeling lousy, trapped in a hospital bed, besieged by well-meaning therapists and ignored by nurses, staff and at times, by doctors, try to hold your temper and maintain good relations with everyone around. They aren’t used to it and will respond accordingly.

[John Ulfelder]

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. Had a sore arm for two days; no other side effects. I have always had a question about my level of immunity due to the fact that I had IVig treatment and plasmapheresis in April as part of my treatment for MG. I am concerned that the treatments may have weakened my coronavirus immunity, but there is not good way to find out (antibody tests are not reliable). MDs ae not able to say with any certainty. Thus, the booster. In addition, I recently received my annual flu shot as well. Generally, I think vaccines are an important tool for everyone. I have receeived vaccinations over the years for pneumonia (both vaccines), tetnus (DPT) every 10 years, Sbingrix (chicken pox) and depending on travel in the past Yellow Fever, Menningitis, Hepatitus C, etc. No serious reactions.

[John Ulfelder]

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 helping with my ptsosis (droopy eyelids) which are causing serious problems with my vision. Other symptoms (difficulty chewing and swallowing) are in remission. My neurologist has suggested that we look at Cellcept as an alternative to prednisone. It, too, affects the immune system and production of white blood cells. Several problems. After I start taking it it takes 6 to 9 months to become effective before we can reduce or eliminate the prednisone. It also can cause skin cancer (so much for vitamin D production!). I have a history of basal cell skin cancers that needed removal befrore they became more serious. I am consulting with my dermatologist to see if she has a strong objection to my taking Cellcept before my neurologist prescribes it. Its always something, isn’t it!

[John Ulfelder]

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 ptosis (drooping eyelids) startd to get worse. Going back to 25 mg to see if it helps my eyelids & keeping an eye on the bruising and bleeding issue. Its all a delicate balance between symptom relief and uncomfortable side effects. We are also looking at alternatives to prednisone. Otherwise, I don’t seem to have any other rections to the drug.

[John Ulfelder]

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, therefore, went ahead and got my third Moderna vaccination (booster, same dosage as original shots) 2 weeks ago. Only effect was a sore arm for 3 days. Don’t know what my COVID-19 anti-body status is. The anti-body tests are notoriously inaccurate & misleading.Keeping my fingers crossed, wearing a mask ad maintaining appropriate physical distance when out.

[John Ulfelder]

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!

[John Ulfelder]

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.

 

[John Ulfelder]

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 disease with ups & downs.

[John Ulfelder]

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 that accupuncture can help with the symptoms of MG such as droopy eyelids? Does it help with the nerve/muscle connection? There are a number of accupuncturists in my area and I’m sure I could find one to work with specific to my needs. Any particular accupuncture training or school I should look for? Thoughts & suggestions welcome.

[John Ulfelder]

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.

[John Ulfelder]

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.

[John Ulfelder]

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 scans and MRI didn’t turn up any abnormalities or tumors, EMG on arms and torso were normal, subsequent EMG on face (not painful or particularly uncomfortable) also negative. Neurologist still working on assumption it is MG even though we don’t have a definitive diagnosis from all the tests. Plan to repeat the blood tests in a few more months to allow anti-bodies to build up again after IVIG and plasmapheris treatments. Sure would be nice to have some definitive diagnosis! My wife is my advocate and a damn good one.

[John Ulfelder]

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 rounds of plasmapherisis (2 days apart) also as an in-patient. This treatment did not have a marked effect on my symptoms either. With the help of therapy while in the rehab hospital and at home I have regained my ability to swallow and am able to pretty much eat and drink everything. As a result, I will be having the feeding tube that was installed while I was in the hospital removed in the next couple of weeks. My eyelids, however, are still drooping and interfering with my vision. My neurologist continues my prednisone and mastedon and says it may take some time. I am scheduled to meet with a neuro-opthamoogist who works with MG patients to discuss additional treatment for my eyelids. Fingers
crossed!