[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.

 

[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.

 

[TheresaG]

Cyndi,

I too have respiratory shortness of breath.

as of now doing pretty good in the IVIG, which in the past 2 weeks has made my SOB mostly on exertion, but for 8 years  it has been from speaking for an hour or more, and or upper body usage fatigue.
Or I will be active and about 2-4 p.m. literally fall into bed, SOB and must sleep for 1-2 hours and awake with my energy renewed. It coincides with my legs ready to collapse.

Do any of you experience anything similar?

 

 

[TheresaG]

Don’t feel dumb…ever.

this site truly is not terribly easy to navigate.

if you would like to call me I would be happy to walk you through it. Feel free to message me.

 

[TheresaG]

Stanley,

we are a definite misunderstood group.

always speak up and ask questions.
be your own advocate and don’t be bullied or intimidated.
it can so easily happen when we just are trying to be respectful and polite.

im a bit of a newbie being diagnosed 10/2020. That said, I’ve been around the block in the medical field with a rare cancer as well. So I learned to get all the answers I could and to know as much as I can if not more than the treating doctor. They often are treating multiple diseases and not a specialist in yours. So you have to be.

See my post I am writing now regarding the forming group.

[TheresaG]

Norm, not sure which conversation you are referring to on antibodies. But the MG antibodies are indicative of a neurological disease where the antibody affects the nerve communication to the muscle. Layman’s description.

I am seronegative, I do not present with the ACHR, MUSK or the 3rd one. Either they have not discovered the others that cause it, or the tests are not sensitive enough to detect it. OR, it is a muscle myopathy.

They can present very similar, but if you are antibody positive, then you are for sure  MG and it is affecting the nerve muscle communication.

If you did not watch, there  is tons of info on the MGFA conference held last week that may answer your question more deeply.

 

[TheresaG]

In the upper right corner click on your profile.

then click messages.

put my name in and it will come to me only.

if you have difficulty just dm me.

 

[TheresaG]

Tim….so true. We are on the tip of the iceberg in seeing how this Covid will long term impact society.

[TheresaG]

Tim, if a doctor has not told you that, I’d pretty much bet on it.

I believe mine was unleashed due to a MRSA infection a couple years prior, wad put on vancomycin pump…OR… my body fighting my cancer in the early days plus all the antibiotics and anesthesia used in surgery.

trauma as in surgery, or other trauma can cause that autoimmune disease to the forefront.

I gave a family history of autoimmune diseases. Wonder how many others of you out there do. If you don’t actively know, might want to ask immediate family.
also don’t ge surprised if you suddenly develop another. Quite common to experience more than one. Not just MG but autoimmune in general.

My daughter has had Lupus for 27 years, along with others that developed over time.

 

[TheresaG]

We already are hearing of our  MG community experiencing exacerbated symptoms and or new diagnosis after having the vaccine or the Covid.

Our antibodies are being activated and IF you have an autoimmune predisposition, it makes sense some will overreact which  what happens in autoimmune disease and attacks  the body and unleash an autoimmune disease.

Just my untrained opinion.

[TheresaG]

Nan,

I have the option to go on vyvgart whenever I’m ready.

i speak to neuro again Monday.

I figure nothing to lose but 4 weeks.
im on Medicare and a BCBS supplement and he is confident he can push it through . It is Barrow’s institute so they have the systems and staff to make this sort of thing happen. I’ve had many occasions over the years where one doctors office could make a treatment happen when another could not. Not necessarily MG. Even getting IVIG is off label for seronegative.
so it can be done.

[TheresaG]

Amy, right on! Me too.

Cyndi and I are working to get that zoom group put together.

I think you sent her your email?

feel free to pm me.

[TheresaG]

Julie,

Cyndi DeHoff and I are working to get the group together. If any of you have not already done so and are interested please PM Cyndi or I your emails so we can connect. Hopefully we can get this together by next week and send out emails.

Your story is interesting to me. Mine started about 2012 near as I can put a finger in it. Visually issues. Neuro opthamologist ran achr and musk. Negative. Then a bout with Neuroendocrine cancer 2014. After my surgery I’m guessing the drugs and or trauma released full in MG. More blood tests, went to UCLA to a rheumatologist there. They and UVi ran every antibody know in 2015 all negative except for positive ANA 1:1280 amc centromere antibody. After an accidental discovery that I took prednisone and felt much better they first out me on 10 mg, we weaned back to as low as I felt better on and it was settled in 5 mg. All the while with caution with the concern of scleroderma which pred is contraindicated for. They dismissed me with undifferentiated connective tissue disease. Pretty sure that’s what they call, “ we have no idea disease”.

my daughter was dx’d with it 25 years ago, she began with bilateral drop foot at 27. The. After not positive antibodies she finally had a positive ANA after 5 years at the end of her pregnancy. Dx’d with lupus. It got quite severe and she did a clinical trial which was not put forth fda> 2 years later she was given rituximab which out her lupus in remission. Her muscle problem has moved to her upper body and respiratory. Very severe. She is headed to Mayo in March to investigate further. She actually has never been given SFEMG which astonishes me.
my father was told he had ALS. I now believe he had MG based upon his health path. Now deceased so too,late fo find out.

sister had chrohns, RA. So yes un answer to your question as autoimmune runs in families we’ve been hit hard.

i really believe this connection can serve us seronegative well to compare and perhaps take our similarities to the researchers.
Interesting that so far it is all females that have responded.

are there any seronegative males out there?

[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.
`

[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.

[TheresaG]

Maureen,

sounds like upper arm fatigue, do you get SOB as well? I get like that then collapse as well. Sleep revives.
I wonder if the cold air in your lungs could also impact what happened.
I always look for the answers.
take care! Stay warm.

[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.

[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.

[TheresaG]

Maureen, where are you located?

[TheresaG]

Maureen,

ABSOLUTELY you must advocate for yourself. Expecting in the Covid environment, medical treatment is stretched to their limits, silly things like waiting for someone to call. I’ve found that if they say they will call or if the schedule says they can see you for a couple months, call and get to their assistant and see if they will move you up.

I’ve been in this medical circle for too long, I am 68 and I figure I don’t have a lot of potential quality life left to allow the system to dictate.

I don’t have a Zoom account, do any of you? Or are any/ all of you able to FaceTime?

this site is very squirrelly on the eyes. I generally live with 1 eye closed.
Cyndi, my daughter also said sleep apnea not applicable, rather a respiratory O2 test for the muscle weakness.

those of you with leg pain, is it just cramps or I have recently experienced achy in lower leg when sleeping, not the normal cramps. and it is quite cold here in AZ, 15 at night, right now.
Curious if any of you have that.

‘interesting we are all female so far on this thread. Coincidence?

Feel free to direct message me.

im hapoy to take the bull by the horns, but as I tell all my family and friends, I never know when I can get things done, making commitments difficult as you all surely experience.

‘’one of you mentioned about not sharing with others because they don’t get it.

so true.

I’ve learned it is very hard to walk in someone else’s shoes.

we all live with the feel good this morning and then an hour later, what happened? I have to sleep!

 

[TheresaG]

Amy, be careful with an ENT or any other specialist not dealing with MG.

before DX I was 3 days away from an EXPERT university opthamologist doing surgery in my eyes to “fix” the muscles.

thank goodness I was too vain to possibly have sagging eyelids.!!!!

medication can  help with the swallowing issues.

i was where all I could eat was soup, protein shakes and baked potatoes.

i was 25 pounds underweight. 5 mg only of prednisone resolved that issue.

i believe IVIG alone would do the same thing.

if any of you are not familiar with the new drug VyVgard, while not approved for seronegative, my neuro will put me on it when I’m ready as it can be used off label, just like other treatments. They just need to know how to process it.
it can always also be appealed on insurance.
it has good results in clinical trials.

 

[TheresaG]

Amy, I have heard that cellcept can take up to 6 months to work.

it sounds like you have not been out on prednisone which often is given concurrently but if you are doing okay without that is great.

i had been on 5 mg for a couple years because it made my undiagnosed symptoms better.misinformed as I was diagnosed, the neurologist I “was” seeing out me on 2.0 mg. Gained a ton of weight, experienced emotional issues. It is the devil and savior combined. I was misguided on that score and in fairness, it was all telemedicine, height of Covid so not the best way to enter the prednisone war.

 

For what it is worth, for me, IVIG has been a godsend.
‘I had a response the first infusion. If it were not for the prednisone withdrawal I have a feeling I would be in pretty good shape with IVIG and mestinon.

[TheresaG]

Amy,

I agree 15% likely a low estimate, but I also believe it is way underdiagnosed.

As you are in MN, have you gone to Mayo?

They do have the best Neuro dept for rare diseases.

[TheresaG]

Nan, what is PLEX?