Working with MG diagnosed as a senior

[ANITA A. TARLTON]

I understand the worry.  I was diagnosed 4 years ago at age 61.  On oxygen 24/, unable to do the things i was accustomed to doing easily.  Now at 65, I am better than I was.  I’ve learned to adapt a lot.  I’m still able to drive, though I didn’t drive for a year because I couldn’t trust my vision.

I am concerned about what I may saddle my husband and grown kids with. I’m praying for strength for us all.

[Norm]

When I was first diagnosed, I checked all the MG websites, esp. regarding the prognosis. I read that MG stabilized after the first two years. My dysphagia seems to be slowly worsening. What has been your experience?

[Robert B.]

I’ll pray for you, Stanley!

I got generalized MG at 58 and I’m now 65. IVIG has kept me stable, which I’m thankful for.

God bless you and your family!

Robert

[TheresaG]

Diagnosed at 67.  For 5 years I was consumed with SOB, dysphasia, ptosis, blurred dbl vision and disabling muscle fatigue and unable to eat much. A rheumatologist put me on 5 mg  of prednisone with a diagnosis of mixed connective tissue disorder. This gave me a 30-50% life back. After seronegative  dx in 2020 I was put in 20 mg pred., then began IVIG November 2021. This has proven a life saver for me, however the delicate balance of weaning off prednisone (steroid withdrawal)while receiving the benefits of IVIG is frustrating. The acceptance that I will never resume what I call my normal life/body is hard. I push the limits every day.

Never give up. Some days are easier than others, and I look forward to each of those. It is sad when I see my contemporaries living their normal lives, but I do believe that everyone is given some burden in their life to handle. We don’t always know what others may have in theirs. There are some worse than this one and not all are diseases.  I try to remind myself of this daily. I think it is just part of the process we call life.
Being flexible, adjusting to the situation at hand and acceptance  is what I think we need to strive for. There is so much research and new treatments going on it is crucial to keep appraised and make sure your doctor is on board to give you what is needed.

We are not too old to expect them to give us the most up to date there is.

Thank you Stanley for starting this thread, it is important we each look for the meaning in life each day, it changes.
Have a great weekend all of you.

 

[Amy Cessina]

Doctors say this disease stabilizes after 7 years. But who knows they say a lot of things I have found just not real life. Recently I have a lot of pain in neck and arms. Worry it’s something new. Plus every time I have dental work things kick up in my mouth area, even just a simple filling.

[Norm]

The Cleveland Clinic says “With treatment, most people with MG lead full, active lives. Symptoms tend to reach their peak in severity within one to three years of initial diagnosis. For 15% of people with MG, the disease only affects the eyes and face (ocular MG).”

I was diagnosed in June of 2019, so it’s been about 2 years and 8 months. For a long time my only symptoms have been periods of extreme fatigue and difficulty swallowing.

Do most people with MG peak and stabilize, peak and get better, or is the path of the illness just extremely variable?

 

[TheresaG]

I’ve not heard stabilization by the doctors.
we are each so unique, my neuro does not assure me of anything. It’s like I am my own Guinea pig and will respond or not to each treatment.

[ANITA A. TARLTON]

I think we each learn our own limitations.   There are days when I can go go go, just like before.   But by mid afternoon, I feel “tired in my back”.  That’s my signal of enough.

Funny, I was a teacher for 30 years. The last 15 years I worked,  when I got home, I would have to lie down 20-30 minutes. I remember telling g my kids that my back was tired.  Sounds crazy…. but it’s just a feeling like my back doesn’t want to hold me up any more!

I appreciate this thread to compare notes with other seniors.

[TheresaG]

Anita,

I completely get it.

i think this is great we can compare notes, it helps to confirm what we think is MG. Otherwise we just think it is our own issue. As this disease is so different in each of us there is a ton of similarities which may not be “confirmed “ MG symptoms by authorities.

[ANITA A. TARLTON]

Yes!!  Great  guinea pig analogy!! We are all diagnosed with a variation of the same disease. Yet how we present it, how we respond to different treatments,  and how we come to manage our lives may be completely different!

[Heather Kaye]

And I thought it was just me ! My back tells me when enough is enough too.I get a kind of burning pain between my shoulder blades, and like you,the only thing that helps is to sit down.I now look quite like a tortoise as my hump is now very pronounced and my head feels too heavy for my neck.MG ,the gift that keeps on giving !

[Norm]

I was diagnosed when I was 72. The ptosis and diplopia at the time were clear markers of MG, further confirmed by electromyography and antigen blood tests. But what about the episodes of fatigue (that practically force me asleep) and the difficulty swallowing? How does one know whether a symptom is that of MG, or of natural aging, or of some other ailment?

My neurologist at the time said that MG patients very often attribute other ailments to MG. But my unscientific, gut feeling is that our very complex immune systems, obviously out of kilter as evidenced by MG,  may very well (and probably) affect us in “non-MG” ways.

[TheresaG]

Norm,

at 68 I am always analyzing the aging process in my symptoms.

however my first symptoms began about 10 years ago with ocular, progressing to swallowing and upper body fatigue, combined with shortness of breath , full on fatigue where I could barely stand up and had to go sleep.

we are certainly all different , and depending on what meds you may be on.

It is my ideal to see a couple specialists, belong to sites like this, and read and get as educated as you can in your disease.

ask yourself if after you sleep in the morning, are your other symptoms better? If you take a nap, are they temporarily relieved?

I find doctors can have varying opinions on disease. Do they only treat MG? I had a cancer in 2013/14 a rare one and I was misdiagnosed by a dr. With great credential at a university.

even after diagnosed, going down a learning curve like this one to find many “specialists “ in my cancer had very different opinions as to treatment and if in fact my cancer was ongoing or in remission.

that said, even with MG you will gain different opinions so you must do as we are doing here and learn as much as you can.

my swallowing was eliminated with 5 mg of prednisone.
my SOB relieved with IVIG.

another thing I do is to compare myself against my friends nor my age to see how tired are they and what can they do?

I think the fatigue that comes with MG is so overwhelming it is not just “tired” where others cannot even relate. At least for me it is.

i hope that helps for you to identify if your symptoms are MG air aging.

my husband is 72, and maybe 2.0 times a week will “nap” but he keeps quite busy and a 2.0 minute nap is not uncommon for anyone this age. But if he can’t take a nap, no problem, when I need a nap, it is a problem, I must sleep.

based upon what you say, it sounds like MG symptoms. That overwhelming needing a sleep.

good luck.

 

[Norm]

Yes, my symptoms are better first thing in the morning.

Like you, my MG fatigue is sometimes overwhelming. Several times I have awoken without remembering my going to sleep.

I used to think all doctors knew everything. Now I think the treatment of an illness is very much a joint patient-doctor effort. The doctors have a lot of training, education, and experience. But any one doctor’s knowledge (and caring) is finite. Moreover, I know my symptoms better than anyone else.

[TheresaG]

Today is a different day with the medical field, it is so immense and so specialized, and as they say they are “practicing” medicine. I’ve always remembered that phrase. It helps to keep perspective and for me to know I have to advocate for myself. No one walks in your shoes except you.
good luck in this journey.

[ANITA A. TARLTON]

The overwhelming fatigue that comes out of nowhere is the most difficult thing for me to come to grips with.   Today, for example….beautiful weather, I haven’t done anything physically exerting. Yet, I have moved from bed to recliner, all the energy of a sedated sloth.  If I’d had plans, I couldn’t have done them.  It’s really frustrating.

[Amy Cessina]

Btw I was considered  late onset for a female. I do worry it will ruin my retirement. I’ve worked my entire life and I feel distraught at times this is what I’m now stuck with. I’ve tried for years to try and mentally accept this but I am not there yet.

[TheresaG]

Amy, cruises make for good retirement journeys with MG.

it definitely put a damper on the “golden” years.
but is is what we make of it.
`

[Norm]

You may be interested in this article from the Journal of Neuromuscular Disorders. From it: “Central fatigue is believed to be important in protecting muscles from further damage by down-regulating physical activities.”

Central fatigue is different from the muscle fatigue characteristic of MG.

[Norm]

Here’s another article on “Muscle fatigue: general understanding and treatment.”

It too makes the important distinction: “Peripheral fatigue is produced by changes at or distal to the neuromuscular junction. Central fatigue originates at the central nervous system (CNS), which decreases the neural drive to the muscle.”

We MGers are prescribed drugs to reduce peripheral fatigue, but usually not those affecting central fatigue.

Among the potential treatments, it lists caffeine. I have gradually increased my caffeine intake to four protein drinks, each with the caffeine of a cup of coffee, more or less. It works for me — I usually can be active through the afternoon.

[Leslie]

Thank you for the links, Norm. I’m 56, just diagnosed, and I have had SLE (lupus) for 20 years. I thought lupus fatigue was bad, but this MG fatigue is on a new level. It hasn’t seemed to get much better on pyridostigmine, either, which has been disappointing. I seem to improve slightly with caffeine and sugar, but I’m afraid of gaining weight with the sugar.

I’m grateful to learn that the fatigue is normal (not just me being a wuss). I can retire in 4 years (uncomfortably, but survivable), and I’m just trying to hang on until then.

[Deborah A Dortzbach]

Warm greetings fellow seniors! As a 72 year old diagnosed with myasthenia only 3 years ago and now learning to cope with generalized MG, I am blessed to learn with you all. I am witness and partaking of all you speak of—unannounced (and most unwelcome) fatigue, trials with different medications, sleepless nights, interrupted careers and retirement plans. BUT, I am also discovering strengths and resilience in areas I never knew I could develop, the joys of slowing down in life to enjoy moments again and grasp things I would really like to do and people and others I really want to invest in. You know, I am grateful that for the most part pain is not a daily part of life, and when something doesn’t work, there often are options for something else. Even uncertainties can bring an element of surprise and perhaps adventure, if one spins that perspective once and awhile. I take lots and lots of medicine, (cellcept now) after more than a year of prednisone and months of IVIG, but now,  maybe for awhile, I can press on with new discoveries. Praying you all can, too.
Debbie

[Leslie]

Hi all, I’m following this thread with great interest, and I really appreciate the information provided. I’m newly diagnosed at age 57, and I’m striving to keep working for four more years when I may be able to retire. It took 5 years to get diagnosed, and all the while my fatigue, vision problems, and difficulty swallowing continued to get worse. I have lupus (SLE), so at first I attributed my symptoms to that. But when I started having trouble balancing (falling down stairs, off a ladder, running into walls, etc.) I knew it wasn’t the SLE.

But I’ll give you guys a little perspective. SLE causes fatigue; I’ve dealt with it for 20 years. Also brain fog. But MG fatigue is otherworldly. Just OMG I have to sleep now. I don’t know if it’s worse for me because I also have lupus, but it feels different. I’m assuming that it’s a different source, the CNS fatigue, perhaps, that just shuts everything down.

Mestonin has really helped. I’m able to drive home safely at night. But if you all who made it to retirement have any tips for me, I’d sure welcome them.

[Heather Kaye]

Your situation is exactly the same as mine but in .I was diagnosed with MG at 50 (I am now 65) and now I will now, almost certainly get an official Lupus diagnosis.For about 10 years I have felt that there was something else amiss.I agree with you whole heartedly that picking apart the 2 disease is next to impossible.Luckily for me I have an excellent rheumatologist who can see past the MG ,the Sjogrens,the pretty serious Raynauds,the malar rash…I coulkd go on but I am boring even myself ! My antibody tests coupled with my symptoms are now pointing straight down the barrel of Lupus.

I have managed my working life by trying to work in short sharp bursts but I do appreciate that not everyone is able to do this.The fact that I am self employed has made all the difference.However come 6pm I am asleep on my feet.Ultimately I feel that powering through Is the only way to go.The vast majority of the population will never know what exhaustion REALLY is.

Regards

 

[Ronald E. Clever]

I am 61 years old, getting ready to leave work on disability due to being out of ;breath everywhere I go.  I weigh in at a whopping 425 lbs which is definitely part of my problems.  But I have been overweight all of my life but never as big as prednisone has made me along with the other drugs.  It seems any drug I take either makes me hungry or sleepy.  That is the main reason I have to quit working.  I commute 90 mins each way for my job and I am constantly falling asleep at work.  It takes me forever to get home since most nights I have to pull into a parking lot and take a 30 – 45 minute nap so I can finish my trip.  I have started walking with a cane since I have a tendency to fall and have had to be taken to the hospital due to cuts to my forehead and bleeding.

I have other ailments as Asthma, Sleep Apnea, High blood pressure, High Cholesterol and under active thyroid.  I would love to think I will have a period of remission like I read some of you have experienced but I doubt it.  I also do the IVIG treatments and feel much better for the first two weeks afterward but then the next two weeks I go downhill.

Hopefully I will get approved for disability and not have to worry about traveling to work and keeping my job and just to concentrate on my health.

 

Thanks for listening.

Ron Clever

[Ronald E. Clever]

Heather Kaye,

 

Your last line says it all to me.  I feel as if I have been exhausted for the past 15 years.  I can’t even sit to watch a movie or an hour long show for some entertainment without falling asleep for 3 or 4 hours.  And since I commute and work I am sleeping all weekend.

[Andy Seles]

My heart goes out to all of you who have shared.  MG is truly a “snowflake” disease and I have yet to see a carbon copy case.  Since I was diagnosed over two years ago, at age 72, I have seen a half dozen neurologists (at great distance since no competent ones were nearby).  I am on Soliris infusions every other week.  Not one neurologist gave me a similar protocol in terms of medications or menococal boosters.  One neurologist insisted that I take a daily antibiotic while on Soliris (I don’t and won’t).  Another told me a needed a menococoal booster after two years while a pharmacist told me three.  Another told me a thymectomy was useless, especially at this age; another told me to go for it (I did).  IMHO, we just have to find a neurologist we are comfortable with and “do the dance.”  I’ve always been told I have an “on/off” switch when working.  MG is evidently trying to teach me to modulate, but I’m a slow learner.  It’s tricky because I also know I need to use it or lose it; I walk two miles a day religiously plus doing home garden work.  (Some days better than others in terms of fatigue.)  You are not alone; and, evidently, there will be more of us as I recently heard on a televised national health conference that neurological disorders are the next “pandemic,” supplanting the focus on cancer treatment.  That’s not meant to comfort anyone except for the hope that more research will go into causes and treatments.  Blessings.

[David S]

Good Day –

70 y/o male diagnosed almost 3 years ago.  Prednisdone, Mestinon,  Imuran and monthly IVIGs.

I appreciate this thread and your input.

What is SOB?

For me/us, my wife Carol, this disease/disorder has been life changing.  I am considered “stable”.  I have been retired for many years so I am very impressed how some of you work while dealing with MG.  I could not imagine – my hat goes off to you.  🙂

We just returned from a 6 day, 5 night Caribbean Cruise.  For us it worked out well.  We had 2 shore excursions planned but only did one.  Mayan Temple – 14,000 steps that day.  The next day we were in Cozumel and had another shore trip planned but decided that we would not do it.  Over breakfast that morning, my eyes started to twitch, eyelids were drooping, more than usual, speech was effected and hand tremors started.  We spent the day by the shipboard pool and rested.  I was also very fatigued the next day as well.  The ship was not crowded and were able to find Isolation areas both on the open deck and indoors.  Everyone was masked indoors and the staff was also masked outdoors.  Only those that had been vaxxed and boosted were allowed onboard. We will cruise again.  Maybe an Inside Passage from Seattle to Alaska.

Here in Houston, Spring has sprung, and as the, property Gardener, we have pruned most of the plants and will be spreading bags of black mulch this next week when it gets warmer.  Then onto a drip irrigation system in the gardens.  For me, the physical work is tough.  This year may be different, but I have been able to work for 20 to 30 minutes then I must rest for a while.  Rinse then repeat.  I can usually keep this up for a few hours then I’m shot for a while.

I too have gained a lot of weight.  Before MG I was 235lbs and 6’1″.  Now I’m 270lbs.  I am hoping, with this garden exercise, it will help the fight against calories.

I try to not get too discouraged and keep a positive attitude but it is difficult sometimes.   Most of our friends are still riding their bicycles, hiking and visiting interesting places.  That is the toughest – seeing them live the life that I can no longer live.

So – I must count my blessings and try to give a little and get a little every day.

Scott

[Maureen Gosz]

Anita, I love the analogy you gave of the energy of a sedated sloth! So true! Some days the fatigue is so bad, I could just drop where I stand.
I am 60,& was diagnosed in 2020. I grew up on a farm, & have a hobby farm, now, minus the animals. It just devastated me to get rid of my animals, especially my horse. It was getting to the point that I couldn’t even brush my horse without getting exhausted. Not to mention all the heavy lifting. I knew something was going on, other than my rheumatologist telling me it was arthritis! She finally referred me to a neurologist, who figured out it was MG.
Since diagnosed things surely went downhill. The fatigue, droopy eyes, painful legs, the throat with swallowing & talking, painful muscles around the ribs, ect..
I only work every other day, because it takes a day to recover from the day before! I work in health care, which has been bad this last year & a half. Being on immunosuppressants really had me on edge. My boss has been great, and gives me jobs where I don’t have to be around too many people.
But like so many of you have commented, about waiting to retire & do things you had planned. My husband is retired, & I carry the insurance, so I have to work till 65.
We enjoy car shows & swap meets, but those are attended depending on my symptoms. I tell my husband to go, if I feel I can’t.
Things have changed, that’s for sure. Try to have a good outlook, & just be thankful to wake up to another brand new day.
Take care everyone!

[Monica]

Hi my name is Monica and I am new here I’m not a person to type what I want to say I am more of a face to face person but here goes.

I was diagnosed 9 years ago and I think I have had MG maybe since high school as I think back.

My main sx. was SOB I say a pulmonologist and I really give her a lot of credit she ordered a lot of blood test and a MRI and sure enough I have MG. I have been on pred, mestonon, imuran, cellcept, IVIG plasmaperisis and now on Soliris for 2 years. My doctor wants to  start that new drug that was just fda approved Vyvgard I’m not sure if I want to as I do travel a lot and you take it once a week for 4 weeks and not again until you havea sxs. and that is what makes me nervous as I don’t want to be somewhere and start feeling bad. I still have good days and bad days,nothing has put me in remission. I also have another rare disease Ramsey Hunt which makes me look like I had a stroke.I sometimes get down about these diseases but then I see other people who are worse off then me.I was havaeing alot of issues at my work also I had to get disability and thank God I got it. I do work 1 or 2 days a week which is just enough.Well enough thanks for listening I need to go and relax talk later.

 

 

[Amy Cessina]

I’m actually working in the office one day a week now. The rest from home. No one knows i have this at work. So far it’s been fine , we have to wear masks so there’s some protection there.  I’m actually enjoying myself because interacting with others makes me forget my problems.