[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]

Hi ,

 

I too am seronegative.

I began symptoms 8-10 years prior to dx. Eyes, shortness of breath, fatigue, fatigue, swallowing upper arm fatigue.
I had 4 antibody tests specifically looking for it, by my neuro opthamologist, but as I had just finished cancer surgery,  cardiologists, pulmonologists, rheumatologist and others, all attributed it to the cancer. I literally spent 3 years in So. CA running to multiple specialists because I was not me.
finally after a steroid pack used for my back, and all symptoms improved or disappeared, my opthamologist sent me to a neurologist who sent me to get the SFEMG and BINGO!.

but as you all note, we still get pushed in a corner of, is it really MG or another muscular or autoimmune condition.

‘fortunately I am now seeing a neurologist who still questions “if’s” but tests my MG symptoms. My husband and I shake our head because I am so textbook symptomatic.

I think they just gave not yet identified the antibody that the 15% of us have. They continue to identify so I’m sure they eventually will.

but it does beg the question, “will we respond the same as an ACHR or MUSK identified” patient.

Currently I take, 3-4 Mestinon/day, IVIG, 2 days every other week, and weaning from 20 mg to current 12 mg prednisone.

i have found the IVIG while immediately was effective, as I weaned the prednisone, the pred rebound greatly impacted the progress of the IVIG. This last infusion was great, and I opted to not drop the prednisone because I wanted to continue to feel relatively normal. I’ll drop another mg right prior to next infusion.

with that un mind, we all must know our bodies, how meds affect them and either have a discussion with our dr.s or if they blow us off, continue to manage our health with their help as best we can.

I am most interested in the Seronegative’s Keeping in touch, through here or another platform so we can assist one another. We are a very small group and do get left out of many of the trials etc.

im sure we are all over the country but if any of you are interested in a zoom or FaceTime monthly get together, please PM me and we can try to organize something.
it might be beneficial, especially if we do respond differently.

Out of curiosity, do any of you know how many pairs on your SFEMG were positive? Maybe positive is not the correct verbiage, but I was 2 out of 20 which  leaves some gray area in the mine of 1 of my 2 neurologist’s.

 

[TheresaG]

We have definitely come to the time where everyone will do as they prefer and suffer, ( or not) the consequences of their actions and decisions.

at this stage, I doubt anyone can convince another of anything on the subject.

that said, I recently read on one of the autoimmune websites that autoimmune people have a more robust immune system so perhaps will be less likely to contract any virus. However, once we do contract it, we may have a more difficult time dealing with it as it will grab on harder with our suppressed immune systems due to medications.

this was true with my daughter with Lupus for 27 years. She was less likely to get a cold or flu but when it did get her she would go down hard , pneumonia, bronchitis etc.

I have no agenda other than to share this information.

i agree that with both the vaccine and catching Covid, in 10 years we will see a huge explosion of many autoimmune diseases.

My husbands cardiologist has said 99% of the people in the hospital today and the ones dying from Covid are the unvaccinated, for what it is worth.

 

[TheresaG]

Three years on Prednisone has added 20 pounds. 2 years 5mg, last year 13.5-20.

I definitely feel the added weight has impacted my flexibility, SOB, and joint pain, but who knows. I was 10 pounds underweight prior to the gain, so I would be very happy to lose the 10. The weight is in my torso, which never has been an issue for me.
need a new wardrobe, or maybe not as my social life is nonexistent, thank you MG. Lol

don’t think I’ll be off of prednisone ever, I am on IVIG, and as soon as we can stabilize the added prednisone, perhaps the azithioprine is something to look into if it does the same thing and same benefits.

opinion?

thanks for any input.

 

[TheresaG]

I just completed my 4th round of IVIG infusions. I go every 2 weeks 2 days in a row to an infusion center. I too am given Benadryl for any allergic reaction and 2 Tylenol. This week as I am not a 4 time veteran, lol, I asked if we could pass kn the Benadryl to avoid the fatigue and I also regularly take Zyrtec , nurse said yes as I’ve had no reaction. The only reaction I ever had was 1 headache, due to not hydrating enough between day 1 and 2. They say to drink clear water half your body weight beginning 48 hours prior and 24 hours after to flush kidneys and also to get hydrated. The nurse also told me that the IVIG actually pulls the fluid from the interstitial tissue, which is why many of you may notice a loss of puffiness after the first day. Love losing 2 pounds. Still on prednisone but reducing it. Down to 12.5 mg from 2.0. Yay. I’m at the point where I will only go .5-1 mg each 2 weeks as I am very sensitive to the steroid withdrawal symptoms. I’ve been kn the, for 3 years, different doses from 5-2.0 mg. So it has had its fun with me and I am thrilled to be off.

I have had a very positive response. I feel I am about 80% better after treatment and seems 2-4 day before treatment I begin dragging.

I have likened it to a full tank of premium gas. If you keep the pedal to the floor for 2 weeks, you will run dry, so I “try” to still manage my output so I am as normal as I can be.

my droopy eye persists, so I still use mestinon. I am hopeful once off steroids or at least down to 5 mg, and my body stabilizes, the droopy eye will cease.
I feel that while you are in one hand fixing yourself with IVIG, coming off the steroids creates a hard balance, so until off them I won’t know true effectiveness.

i am also wondering if I need a slightly higher dose to get a fuller tank of gas.
‘Happy New Year to all.

[TheresaG]

I too was looking forward to the approval and my neuro thought it would get approved for us as well.

i meet with him on 1/10 hoping to get info.
I started IVIG 6 weeks ago hoping it to be a short term deal.

I wonder if the drug company felt the approval would get the best chance of approval this way and we seronegative people will have to get approval off label which is how IVIG is anyway.
we will see……

merry Christmas to all.

 

[TheresaG]

Absolutely allows my participation.
as a cancer survivor, I learned to be my own advocate, research the newest and greatest and try to align myself with research and or specialty institutions that do research and know the latest treatments. This site and the participants input has been invaluable to see who is doing well and who is not and what their treatments are. I want to I cur the lease side effects and as one noted above, move towards remission. Not just get by. Life is too short. QOL is critical.

[TheresaG]

Symptoms, initially eye droop, and overall fatigue.

began in 2012, then in 2013/2014, I had problems that had to be investigated, leading to an 18 month diagnosis of another rare disease of Neuroendocrine Cancer. Time out for surgery in 2014, then when I did not regain my otherwise prior great health, energy, etc, and the fatigue started getting worse. Up in the morning, shower, dry hair, go to bed as I was exhausted. Shortness of breath, ongoing eye issues. Neuro opthamologist ran the antibody test, negative, did again 2 years later as vision deteriorated. Then my neck was so painful had to hold,d it with my hands. Eventually had 2 discs replaced which I do have spinal disc issues, but now wonder if it was the MG. 2017, again antibody test after going to a rheumatologist, who out me on prednisone, only 5 mg, for mixed connective tissue disease. I do also have positive ANA antibody, centromere antibody, so clearly autoimmune issues, along with other family members.

then in 2018, after seeing every specialist for everything from pulmonary, cardiovascular, etc, etc, and one UCLA neuro saying no way did I have MG, my opthamologist finally sent me to a neurologist who confirmed with single fiber nerve conduction that it is MG. So I’m guessing it took, 9 years of VERY actively searching with multiple specialists as to why my life came to an abrupt halt. I wonder if my body fought the cancer so hard that it induced the MG. Way too long.

[TheresaG]

I started on 2×60 mg/day, then bumped  to 3. I began the cramps in 2, then the Gastro issues at 3. I would try to go to 4, and that caused lots of gastro.
my neuro recommended taking 1,1/2,1,1/2 etc. this helped.

Now 4 months later, I’m able to take 3.5-4 a day, and do 1,1,1/2,1. On about the 3rd day the gastric issues kick in so I will skip a pill or extend it an hour.
so for me a gradual approach and allowing my body to acclimate helps. I will still occasionally get cramping but not the jump out of bed ones in the middle of the night.

during the summer, watermelon helped a lot!

[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?

[TheresaG]

Christine-

I empathize with your situation.

i too have always had dogs, most current is a rescue tibetian terrier, 15/16 yrs. Old.

many health issues.

i know his “a time” is near.
may I recommend to you and anyone else in this situation a website. Lapoflove.com.

it is a animal hospice group of vets.

there are some wonderful videos and information to assist in when it is time.

I have found it extremely useful and I have used them in the past. Nothing more wonderful than an animal being able to spend their last moments at peace in your arms.

my boy, Webster, is becoming more maintenance but fortunate my husband does his walks. Except for the past 2 months as he ruptured a disc in his back.

We got through that but the animal needs are time specific which does not always meet with my good times.

i would actually in the future consider a dog trained to assist me should there be a crisis or other “senior” event.

An empty house would be hard to come home to.

We love our pets!🐾🐾🐾💜

[TheresaG]

Anita that’s very positive input and I love the thought of it. However, I have so many to-do lists that I can’t get to the end of in order to slow down.

Until then I just keep pushing that ball up a hill and the days I can’t I don’t. I am getting better at accepting that.

It would be so nice not to have this limitation.
I feel sorry for those of you that acquired this at a young age.

[TheresaG]

Nan I too am seronegative.
my neurologist is using it already off label. It can be done.
I have been On IVIG for only two months. I’m also on prednisone and Mestinon. I am currently in the process of getting my prednisone from 20 mg down to seven or eight. So my thought was I will wait to stabilize that and then attempt the VVygard as I don’t want anything in the way to analyzing it. I do fully intend on giving it a try due to the less side effects.
you might want to ask your neurologist if he can make that happen for you if you’re still interested. The delivery system is you go once a week for an hour for the first four weeks and then to about two months later depending on how quickly it gets out of your system you’ll need to repeat it but it certainly sounds very promising. I figure that also gives my neurologist a chance to work with a number of patients to get his results.
Either way you go good luck.

[TheresaG]

They actually included I think 27 people or so in the study and they had mostly positive results. But I agree they likely have to have an independent study with just seronegative. Hopefully we won’t be neglected as there not nearly as big a group of us. That’s why I wonder if they will just use it off label for us.
time will tell.

[TheresaG]

Bernadette

can you explain what double Seronegative means?

thank you.

[TheresaG]

The ground in prisms on glasses I found way better than stick on ones, in fact the stickies did not work for me and caused migraines.
I get my glasses at Costco, and it only adds $30-50 if you want them permanent. I pay $129. Total for new prism prescription lenses, with all the non glare goodies etc.
I Also have them reuse frames as my sight is constantly changing with new meds etc. gets expensive for sure.

[TheresaG]

Wayne, 12/23 as you likely know is the approval date with the FDA, then Medicare has to approve but it should be available after the first of the year according to my neurologist.