Sudden Onset of MG
 

Hi all! I just found this forum, and I'm hoping to find some answers and understanding of this rare disease I have been diagnosed with. Here is my story...

I was an active, healthy, 55 year old female. Seven weeks ago, my vision all of a sudden became jumpy and blurry. I thought something was wrong with my contacts. I went home and started messing with my contacts. The next day my eyelids were swollen and I thought it was because I had messed with my contacts. I realize now that was the "droopy eyelid". Two days later, my face felt numb and I could not raise my eyelids to put on my mascara. Ok, time to call the doctor!

She had three things she wanted to draw blood for, one being MG. Two days later it came back positive. I made an appointment with a neurologist and had a chest scan on my thymus, which showed a tumor. By the time I saw the neurologist a week later, my symptoms had rapidly progressed. I was having trouble chewing, words would get "stuck" in my mouth, my smile was askew, and I was constantly dizzy and nauseous from the triple/jumpy vision. At that point they scheduled me for a thymectomy. The thymectomy was scheduled for two weeks later. By the time I went in for the surgery, I could barely walk across the room or raise my arms. They decided I was too weak to do the surgery. They admitted me to the hospital and gave me IVIG infusions for two days.

The surgery went well, and the tumor was benign. I am now three weeks out of the thymectomy, but the MG is still awful! I am home now and have PT and OT 2-3 times a week. My arms and legs just don't want to work. After I do my PT (which is VERY minimal, like 5 minutes of leg and arm exercises with1 lb. weights) my whole body shakes and convulses for about a half hour. My symptoms seem to change daily and sometimes several times within a day. From eyes, to face, to arms, to legs, sometimes even needing a walker.

Right now I am on 80mg of steroids daily, and 120 mg of Pyridastigmine 4 times a day. I go back to my neurologist next week and I think they will start weening me off the steroid.

This MG has been very hard for me to wrap my head around. Two months ago I was on vacation in Rome climbing the Colosseum stairs with no problem! Now I can't even get down my stairs at home without having to rest when I get to the bottom. I used to swim a half mile or walk 4 miles a day, bicycle, kayak, etc., UGH!

So that's my story, now here are some of my questions...

1. Have any of you heard of anyone whose symptoms came on this quickly?
2. Will it get any better once they start weening me off the steroids?
3. I've heard it can take 2 years before you go into remission after a thymectomy, but do the symptoms lessen before remission?

I'm sure I will have more questions after I post this, but any insight into this "new normal" of mine from the MG Community would be greatly appreciated!
Thanks!

Hi, bchgrl. Isn't it fun to have a disease fall in your lap? Not.

I'm glad the tumor was benign. You are lucky to have had such fast help!

A tumor, surgery, recent onset of MG, and steroids can all combine to make MG worse. And the worse MG is, the longer it will take to recover. So give your body time to adjust.

I'm really surprised that you are doing PT if you are so bad, especially given how badly you do afterward. If you are in an unstable situation with MG, they really need to give you some more IVIG. Please call your neuro!!! These are symptoms of nearing a MG crisis.

120 mg of Mestinon at a time can (possibly) flood the neuromuscular junction and cause a cholinergic crisis, where there is too much acetylcholine going to the muscles. Sometimes a lower dose, more often during the day is better.

Mestinon kicks in after about 30 minutes. Two hours after that, the drug wears off. So we get about 2 hours of use out of one dose. Some people take Mestinon every 3 - 4 hours. Please discuss all of this with your neuro, and don't make any changes before doing so.

To answer your questions . . .

1. Yes, MG can come on very suddenly. Or it can come on slowly.
2. No one can predict how MG will progress. You might need another medication, such as Imuran or IVIG.
3. No one can predict the effects of a thymectomy either. About 1/3 improve, 1/3 stay the same, and 1/3 can go into remission (at least that's from studies about a decade ago).

I know that this is tough, going from someone who can do whatever they want to someone who has to manage energy on a daily basis. Learning everything you can about the disease helps.

A person with MG can become temporarily weaker after an activity, such as washing dishes. Resting or taking a nap after doing something helps. And I mean lying down, not sitting. The more someone does, the longer it will take to recover. And those effects can be cumulative.

There are some people on drugs that do perfectly fine, and live a relatively normal life. But some are not so stable. Finding the right mix of drugs and managing MG with common sense and rest will help.

Make sure you have enough sleep (recharge your muscle batteries!). See a pulmonologist to assess your baseline breathing. Neuros and pulmonologists work together in a hospital setting. A pulmy can assess your breathing if you think you are becoming worse, and do an arterial blood gas and O2 readings. Drink lots of water, eat good food, you know the drill. Do everything to keep your body/immune system happy.

Going off of steroids can be tricky. Watch for any signs of increased weakness or signs of an adrenal insufficiency. Make sure that the withdrawal is not too sudden. Just work with your doctors and let them know of any increasing weakness. With MG, the best thing to do is to seek help sooner rather than later.

You need to be patient. Give yourself time to adjust to this new reality. Read up on MG—there's a lot to know about it, including some drugs that are contraindicated.

Home
Muscular Dystrophy Association

Most importantly, I think you need to call your neuro. You sounds as though you are not stable yet. Don't hesitate to go to the hospital or dial 911 if you have symptoms of a MG crisis (not breathing, swallowing, or moving well).

What else do you need help with?

I've had MG my entire life. I won't lie and say that living with the disease is a piece of cake! But a "new normal" is doable. I wish I had a crystal ball to say how the progression of your MG will go. Everyone who has the disease, much like Multiple Sclerosis or other AI disease, is different.

I hope you will go into remission and be fine. But even then, MG can fool us! ;) Just take it easy, and be good to yourself.

Annie

Annie,
Thank you so much for your insights! I'm sorry you know so much about it, meaning you have struggled with it for years, but happy you can share your knowledge with others.

The PT and OT is also for the thymectomy/sternotomy. My therapists are very cautious about me "overdoing" and stop whenever they see me starting to weaken. I think it's when I do it on my own that it gets bad, even though I try my hardest to not overdue!

I go back to my neurologist Thursday, and I'm going to ask him about the dosage of Pyridastigmine. Everything happened so fast, I have only seen the neurologist the one time at his office, and that was at the initial onset. Of course in the hospital I saw him or someone from his team everyday. I think their thought was to give me 4 weeks post surgery before tweaking my meds. I hope to find out a lot more when I go!


Again, thank you so much!

Kristi

I'm glad to help. When I was diagnosed back in 2000 (yeah, it took 42 years), people here were amazing.

I think that bringing a list of questions to the neuro is a good idea. When dealing with a new disease, it's easy to forget what you'd like to ask! Doctors tend to have their own routine of what they want to say. That might not be the same as what you need to hear!

I'm glad they're being proactive with the PT, but many people just don't "get" MG. They don't realize that we have a static amount of acetylcholine (ACh) going to our muscles. The more we do, the more ACh we need. But the body just can't supply that to the muscles. This quote from Top Gun kind of says it all:" You're ego's writing checks your body can't cash!" We're doing things that our bodies can't handle.

Neuros worry about overdosing with Mestinon, causing a cholinergic crisis. Well, if the dose is reduced a bit and taken more often, then that can be avoided. There are articles on PubMed that detail how taking anything over 100 mg at a time "can" flood the neuromuscular junction with too much acetylcholine. Of course, everyone is different, and some people can tolerate more.

Just as an example, I take 90 - 100 mg. every three hours (sometimes every 2-1/2) round the clock. But I'm not a good example. I can't do the other drugs. I am on a steroid inhaler for asthma, and that does help MG. But I have to rely on common sense, Mestinon, and rest. :cool:

Steroids are not fun to be on long-term, so I'm glad your docs will wean you off of those. They cause more problems than they solve. They can be a good rescue med in the hospital, along with IVIG though.

Take some time to read up on MG before your appt. and write down questions. Some questions, though, neurologists might not be able to answer! ;) They can't imagine what living with MG is really like.

I hope you can find a treatment that you can live with, and will go into remission. Make sure that you check the cancer history in your family, if you are considering going on an immunosuppressant. If you do, stay out of the sun! A lot of people can get skin cancer while on those. I know, more awful info. But that's the reality of these choices.

Holler if you need anything!

:grouphug:
Annie

Hi! Yes, it can definitely seem to come on suddenly. 8 months ago I was a normal 34 year old and then I fell apart. It took 3 months and 5 doctors to get a diagnosis though. (An eye doctor figured it out and then a neuro confirmed it.)
I said "seem" to come on suddenly because as time goes on, I realize things were not quite right before. And I notice my eye turning out and ptosis in pictures when I look back.

But my life seemed normal at the time and now... it sucks. I take the same meds as you except my mestinon is 120mg every 3 hours and I just weaned from 80 to 60 mg on prednisone. They started weaning me after I started IVIG infusions. I also take Cellcept but they are getting ready to change that to a different one (plus the 4 medications for my heart, but that complication is really rare and would not apply to your situation.) Oh I also take mestinon (pyridostigmine) 180mg extended release at night.

Weaning off the steroids will help steroid side effects, but can make your mg worse, better or change nothing noticeable. It depends on your situation, how long on them, etc. For example going from 80 to 60 has made no difference in me.
But a few doses of solumedrol given by a clueless ER made me worse and going back to 80 a day was definitely an improvement.

I asked for physical therapy. They said no. That my PT is walking across my one story home without collapsing into a heap [emoji23]

I recently realized that getting hit by this has resulted in a real grieving process. I have grieved for my old life. Resenting the things I did not do but could have and laughing bitterly at what I thought mattered at the time.

Now I just want to play with my kids.

Eventually I realized that I was still not doing things I wanted but I actually could do. I had to drop some pride regarding help, assistance devices and refocus. See, I am a photographer who cannot see properly... unless I close one eye. And I only shoot with one eye...and it is not the bad one. Sessions are hell but taking pictures of my kids is my life love. That is the thing that has gotten me this far. I would not have made it otherwise.

I cannot answer much about the thymectomy. I do not have the tumor and removing the gland has not been mentioned as an option. (I am not sure if it ever will be since I am seronegative?) I go to an MG clinic soon so I am sure I will hear about it if it is. 3 weeks and counting before I get a little more expertise than this tiny town has to offer.

And I cannot wait.
Accept your grief- from sad to desperate to angry and beyond hopeless. But find your thing. Your life love. And find a way to do it, the closest way you can, no matter how much help you need.
It will save your mind.

-Annahttps://uploads.tapatalk-cdn.com/201...3b7a96202b.jpg

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Thanks for sharing Anna. I’m sorry about your diagnosis as well. That must be so hard with kids!

I have a few questions for you or anybody else who can answer them. You mentioned IVIG treatment. One of the things I’ve wondered about and have on my list of questions for the neuro, is how often they can do IVIG. Do they only do it if you are in crisis mode, or in my case, before a surgery? I’ve tried to research this, and I seem to find different answers which just confuse me more. (Not to mention I can only stay on the computer for so long before I get nauseous because of my eyes, ugh!) I mean do they ever do infusions as a standard treatment every few months or so to re-energize you?

Also, you mentioned an MG clinic, where is that and what do they do there?

You and Annie have definitely convinced me to ask my doctor about taking the pyridostigmine more often but maybe in smaller doses. He hasn’t mentioned any other medications to try yet, but I’m sure when I see him Thursday and he sees how I’m doing with current meds and dosages I’ll find out more.

Thank you again!
Kristi

I have set some “goals” for my husband and I to look forward to in up the upcoming coming months. First, we usually spend the winter in Florida. In fact, we would already be there if this hadn’t happened. My goal is to go after the first of the year. My neurologist already said I could get a neuro there, and maybe they could work together. I’ve planned other simple things like a concert in April, and big things like a cruise next summer. Of course everything is refundable. I’m happy you are able to do your photography again. (The photo is beautiful)

Kristi, IVIG all depends upon the doctor (and what insurance you have). There's a lot of paperwork to be filled out for IVIG. Some patients can get IVIG on a regular basis, some even at home. So there's really not a yes or not answer to that one!

There are MDA clinics around the country, which you can find on the MDA site. One of those doctors (in Florida), who is an MDA director, is Dr. Allan Weiss in St. Petersburg. He is an awesome doctor. There are more, but I don't know them like I do him. They often have MDA days, where an appt. is free.

If you can become stabilized, then taking trips should be okay (with precautions). If you vacation where the weather is hot, then you should stay out of the heat as much as possible. Heat can make MG exponentially worse, and quickly. Just in case an MG patient becomes worse on a vacation, you should know ahead of time where the emergency centers are (if there are any). Scheduling naps in the day will help allow you to do what you want.

But know that this disease can surprise you, even while on meds. A person can do something on one day, and then become worse in the next two days. You have to give yourself time to know what your normal is.

If you can buy one, an oximeter can be a useful tool to know how your breathing is doing. I know what my normal is, and when that becomes too low, I can either rest more or see my pulmonologist to assess breathing more. Since everyone's (people without MG) breathing becomes weaker at night, an MG patient's breathing can be even weaker. Some patients have sleep apnea. An overnight oximetry or a sleep test can help to determine what is going on at night. I say all of that because one's O2 can go lower in a plane. Breathing can be more difficult. Hypoxemia is a heart and brain risk (don't freak!). That's why they monitor the heart during an MG crisis.

Thanks for posting, Anna. That's a beautiful piece of art! I'm a designer (among other things), and really appreciate how hard it is to produce any work. Also, thanks for the info for Kristi.

Here is some other general info about drugs. Cellcept is kind of like taking water for many people. ;) Imuran works better for most, but the neuro needs to run the TPMT test before starting that drug.

TPMT testing before azathioprine therapy? - PubMed - NCBI
Thiopurine Methyltransferase, RBC

Rituxan is a more potent drug, usually used for MG patients who have tried other treatments without a good enough response. That drug has been working for patients, but no treatment is without risk.

I hope your neuro knows about all of the different treatments. IVIG is obviously a preferred treatment, due to no immunosuppression. But you have to think about the damage to veins in the long run. Sorry, kind of scary and gross, but a reality.

I hope others will share their experiences with you. There are some Facebook groups for MGers, but I'm not on Facebook, so I can't direct you to them. Our site has become very quiet of late.

Only you can decide what is best for you and your life! These are big decisions. I'm sure you will know what you want. You sound very intelligent and determined.

I would like to give one caution. Don't let MG fool you. A person with MG can become so weak so slowly that s/he can think nothing of how they are doing. When I had my crisis in 2005, I couldn't squeeze the urgent care doctor's hands. I thought I was squeezing them really hard! It's always best to have some measures of how you are doing, whether that is ptosis becoming worse, O2 going lower, not being able to hold your arms out in front of you for long, or anything else. I say that because once someone is on a treatment, they can tend to think they are "normal" again and go back to pushing the physical envelope. :cool:

Have a great appointment!!!

Annie

Annie,
Thanks again for such great advice! I will check out some of these websites and the MDA clinics. Unfortunately, we are not very close to St. Pete, but will check it out anyway.
Kristi

Dr. Weiss might be able to recommend someone. Mayo is up in Jackson. Maybe do another post asking if others know of an expert neuro in the area you will be in.

Annie

They generally try IVIG after other treatments fail to work. The number of failed treatments required will depend on insurance.
The standard for IVIG is once a month according to the providers I currently have. But for some people, it starts to wear off sooner and they go to every 3 weeks. I am in pretty bad shape today and I am due for another infusion in 5 days. However, they will want me to have a few more infusions to establish proof that I need them more often. (To show it is not a coincidence.)
My infusions take 4 hours, two days in a row. Most people only spend 3 hours there but they have to infuse me more slowly or my blood pressure drops.

I will write more later. My arms are getting floppy.

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There are Two other MG gurus in Florida, one in Jacksonville, one in Miami/Dade. Their names are escaping me now, of course. Also, wherever you will be in Florida, see if there are any local support support groups nearby, maybe to find out who others go to. (We have one here in Orlando).

Thank you! I will! We are in Fort Lauderdale, so Miami Dade isn’t very far from us!

http://www.myasthenia.org/LinkClick....4%3d&tabid=306

Kristi, Do another post, asking about MG experts in that area.

Dr. Michael Benatar, MD, PhD - Miami, FL - Neurology - Book Appointment

Annie

Quick update...
I went back to the neurologist Thursday. He took me completely off the pyridastigmine for a few days. He did feel like I was possibly going through a cholinergic crisis. He kept me on the prednisone for now, however. Depending on how I do over the next few days, he’ll start tweaking the prednisone and we’ll go from there.

Doctors always do this knee jerk reaction thing, where their actions are all or nothing. Oy.

There's a happy medium with Mestinon, as I explained. If you become worse while off of Mestinon, call the neuro back right away. You don't need to go into a crisis of either kind (too much or not enough acetylcholine!).

Annie

Taking me off the pyridastigmine didn’t work, (I thought of you Annie, when he told me he was doing that😄), double vision came back, slurred speech, weakened facial muscles, etc. Anyway, he put me back on very low dose; 30mg, every 6 hours. I told him about taking less more often, but he didn’t do that for reason.

Doctors are human, and get scared. ;)

60 mg. every 3 - 4 hours is sensible. Obviously you don't have enough acetylcholine, not too much.

He must not know of the very short life of Mestinon. Just tell him that Mestinon kicks in after 20 - 30 minutes. 2 hours after the 30-minute mark, Mestinon wears off. I don't even need to look at a clock to know when I need more!

This is the point where doctoring can be dangerous to MG patients. Hit them with gobs of steroids, expect that to work right away, decrease dosage of Mestinon, and hope for things to improve. Yeah, never works. Steroids can make someone worse before they are better.

I'm not a doctor, but I would give you IVIG again on a regular basis, up the Mestinon, and withdraw the steroids before your adrenal glands completely shut off (they don't need to work when a drug is doing that job for them!). Arrogant of me, right? ;)

When are you going to Florida? I hope you will call the neuros there, and find a true MG expert. Be careful on the trip there. I wouldn't exactly call your symptoms "stable MG."

Good thing that you're smart! We need to be our best advocates while doctoring, even if doctors don't like that. :cool:

:grouphug:
Annie

Thanks again for your insight and expertise! I think he took me off of it because I never noticed a difference in my symptoms after I took it, so he wanted to see if it was even working for me. Today, I didn’t talk to him, just received a message via the patient portal, so thought I’d try it today, then message him tomorrow.

Depending on how I am doing, we plan to go to Florida December 31st.
Again, thank you, you’ve been so helpful!

Hi!
I was diagnosed this past August. I started on Prostigmin and after I completed my CT of chest for Thymus I was started on Cellcept (I had steroids with my chemo and begged not to take them again!). He ordered IVIG (I asked for it too). I was an infusion nurse for over a decade and gave IVIG almost exclusively. It has worked for me; but then again I knew what I had. I had treated a lady with Ocular Myasthenia Gravis for over 7 years. I went to her neurologist appts. and studied her labs. I developed stacked double vision last January and knew what was wrong. It took me from Jan. to Aug. to get to a neurologist who would treat me! Who would listen to me!

IVIG provided by specialty pharmacies provide financial waivers to patients who cannot afford the copay. I know a company who may offer you one. You can PM me for more info.

IVIG is the drug that will control OMG. I would refuse the steroids on my past experience and knowing that they cause many side effects.

Hi! I’m sorry about your diagnosis as well. How sadly ironic that you gave IVIG treatments for a decade.

Thank you for the information.
Kristi

Hi!
I’ve had a few updates since my last post.

I went for a follow up with my Neurologist here in Kansas City December 18th. He didn’t like what he saw. He thought I’d be stronger than I was since my last appointment and the thymectomy. He admitted me to the hospital for Plasmapheresis treatments. He said he may be going to an extreme, but he wanted me to gain strength before the holidays and trying to get to Florida. I was happy he took the more aggressive approach. I had 5 treatments and was released on the 6th day. My first day home I felt better than I had in months! I woke up the 2nd day, however, really bad. I missed all Christmas activities. But since then I’ve been better than before the treatments, just not as good as the first day. I’m just on that daily roller coaster we MG patients live on!

Annie, I wanted you to know I have an appointment with Dr. Weiss January 8th. I’m anxious to see what he says!

Happy New Year!

Are you back on Mestinon? I hope so!

If you don't have an oximeter, that might be a good thing to have. You can then know your normal and what isn't. Just don't panic if you have one on the plane with you! O2 tanks in an airplane.

I'm glad that your doc finally wised up, and got you treatment you need.

I'm sure that Dr. Weiss will help you with whatever you need. He has years of experience with MG, and treating it. He is an amazing doctor and human being. Just make sure that you ask as many questions as you need to. He might be able to refer you to a neuro closer to where you will be in FL.

Be careful in that Florida heat. Yeah, I know, it's winter. But you really have to stay cool. And please nap after any activity. Don't overdo. To me, your MG doesn't sound stable.

Please let us know how you are doing! Trust your instincts. I hope you have a good time.

:grouphug:
Annie

I am glad to here you are doing better!
Who is your Neurologist in Kansas City?
Mine is Dr Pasnoor!
I go back in March for my follow up appointment!
Happy New Year 2019 hope it’s a better year👏
Alton

I go to Dr. Kelley with Shawnee Mission.

Hope you are getting better enjoy Florida
Keep us updated !
Safe travels 🏖
Alton

Thanks! Yes, I have been back on pyridastigmine for a while. I was only off of it for 3 days.

Hi Mikanro, et al: I'm new to this process and I am just learning about MG. However, I thought that I would toss into the discussion my situation since my Dr has started working on getting me on Soliris IV. As I understand it, the initial treatment requires Infusion for four consecutive weeks (1/wk) and then a higher does the fifth week -- then doses every other week forever. His main concern is to get me off of Prednisone. So far my problems have been mild and just related to my tongue and speech slurs -- this started "overnight" about 5 years ago. I am 84 years old now. Compared to many in this discussion, I have been very lucky. Wishing good luck to all.

Haven’t posted for a while MG can come on very suddenly mine started with double vision and weak legs !
Had a Thymectomy November of last year did not have a tumor
My Neurologist recommendation was a Thymectomy!
After surgery I am seeing improvements have cut my medicine in half !
Hoping for remission my take up to 2 to 3 years !
Everyone’s MG is different so stay positive
and prayers for yours to go into remission 🙏

Alton

Good luck! I’m going to ask about Solaris next time I go to the doctor.

I hope you continue on the path of improvement!