Some Myasthenia Gravis Symptoms Scare Me More Than Others
When I was diagnosed with myasthenia gravis, I did what most people would do: I Googled my new rare disease and came to the instant conclusion that I would die within the next 48 hours. Dramatic, yes, but Google searches rarely lead to encouraging news.
Before my diagnosis, I was already experiencing weakness in my limbs, face, and left eye. But after reading about all of the other possible symptoms, including breathing muscle weakness, my fear went through the roof. How much worse could this possibly get? And would I ever stop being scared at the slightest sign of weakness?
While every aspect of MG is scary, there are certain symptoms that frighten me a bit more than others. Maybe it’s because I’ve lived with them longer than the others, or maybe it’s because I haven’t completely worked through the trauma of having them. Whatever the reason, these symptoms cause the most anxiety.
My first MG symptom was difficulty swallowing and chewing. It was weird for my mouth to suddenly stop working correctly. Liquids would dribble out between my lips, and I would choke on the smallest bits of food. And it wasn’t just the symptoms that scared me, it was what they could lead to. What if I choked while I was by myself? What if I could no longer eat without medical assistance?
The combination of symptoms and their possible effects still make me fearful whenever I swallow food and start to cough, or when I drink water too quickly. For a second, I’ll wonder if my MG is making an encore appearance. I’ve been lucky so far. And to be fair, I really should slow down when I eat.
Double vision is another symptom that makes me anxious. It’s another one of those symptoms that can lead to other accidents. When I first experienced double vision, I decided I could still drive without incident. Was this a dumb decision? Of course it was, but I was still in a denial phase about my MG. So, my brilliant way around the pesky double vision was to simply cover my left eye while I drove.
After experiencing weakness in my face and left eye, I also started to feel it in my limbs. Washing my hair became next to impossible, and walking up the stairs was a no-go. Even when I tried to walk down my dangerous back stairs, which include all of three steps, I fell down on my knees and had to drag myself back to my house. Again, this kind of weakness could lead to many types of accidents, such as falls that cause cuts, broken bones, or worse.
As time has moved forward and my MG has remained stable, these symptoms keep me on my toes. But I’ve learned to use fear in a positive way. Instead of stressing out, I channel my fear into staying focused on what I can do now. Currently, I can walk up and down the stairs without issue, and I can chew and swallow successfully. Therefore, the “right now” is all that really matters.
We can’t change the past or predict the future, but we can appreciate the present and take care of ourselves as best we can. I refuse to let the fears of my past stop me from enjoying the present.
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Rick Fetters
Nice article. My experience with bulbar symptoms are similar. However mestinon relieves bulbar symptoms for me. But the anxiety still lingers
I have recently started Soliris and am getting positive results after only 4 weeks. I am hoping when I get the full 1200 mg dose this friday it will help even more.
But even so, MG is so unpredictable and unique to each person, there will likely be continued anxiety well into the future.
Michelle Gonzaba
Thanks for the comment, Rick! I'm so glad Soliris is helping you.
You are totally correct-unpredictability will always breed anxiety. But all we can do is take care of ourselves and live our best lives!
Frieda Goovaerts
Keep on the good spirit and keep on writing your colums, thus doing you surely help others like me with LEMS (Lambert - Eaton Myastene Syndrom) Thanks for reading this!
Michelle Gonzaba
Thank you, Frieda! I really appreciate you taking the time to leave a comment.
Cheng louisa kianda
Hello, my name is cheng Louisa and from cameroon 🇨🇲 29years old. I was diagnosed with MG in 2020 and ever since I've been on medications and for the past couple of months my symptoms seems to be deteriorating despite my conscious taking of medications. I just wish to find out what other medications do most of you with the same health condition take? Cuz it's stressing me out and in as much as I try to fight it I keep going backwards.
Michelle Gonzaba
Hi Cheng Louisa! When I was at my worst, I was taking Mestinon, steroids, and CellCept. On this website, we have forums where other people with MG can discuss their treatments and day-to-day lives. I encourage you to look at them! There is a lot of information on them.
I know how scary it can be when treatments don't help-I'm so sorry you have to go through this. I'm sending you good vibes and well wishes.
Dayana Mathews
My mom was diagnosed with myasthenia gravis in last year. She also having these same symptoms. Weakness came to very serious now. But still we have hope. Now l got more confidence while reading this article. Thank you
Michelle Gonzaba
Thank you, Dayana! I'm glad my column helped you in some way. I'm sending my best wishes to you and your mother.
Douglas Manning
In my journey so far I've learned to compartmentalize my fears by always having one question "top of mind" - "Is this worth my time and effort?"
In it self, the approach might seem more tiresome than the disease, but I've found it to help me focus. The disease process is complicated! In the years since diagnosis despite my best, informed, and sincere efforts I've had crashes put me in the hospital at least once a year. So, now by focusing on that simple question, fear has been replaced by confidence in knowing that I can do the things that are worth my time and effort. To be sure, I won't be running marathons, and that swim across the English Channel will be for another lifetime, perhaps. But life has so much more that is worth my time and effort, and so the fears of choking, pneumonia, breathing, recovery from anesthesia - aren't so much at the forefront of my thoughts, just a part of the planning that takes place when I decide something is worth my time and effort!
Michelle Gonzaba
You are so right, Douglas! Most of our fears and anxieties are a waste of time. I will keep your comment in mind when my anxieties start to flare up. Thank you for reading!
Jools Dyson
Hi. So its like I am that exact person in the article. Is it Michelle...? All that happened to me when I was 14 years old in 1979. Over the 43 years I've had the tjymectomy and mestinon treatment to pretty much being " normal" up to July 2020 where I had this out of the blue flare up of speaking, swallowing and talking issues. It was like a train had just hit me, Bang! What on earth was this....? 43 years of improvement to be debilitated and in the hospital on prednisolone and increased mestinon was just awful. Then to be told that I had FND - functional Neurological disorder???? WHAT !? Have I got worse MG or FND or BOTH. Its july 2021 now and I'm still asking. I'm just out of hospital again after 5 days of ivig and my MG is a 100 times worse. It's like I'm starting all over again from being that scared wee girl of 14 years old only now I see the worst that's to come if my MG follows that same pattern. . I'm too old for all this at now at 56. Jools Edinburgh
Scotland UK.
Michelle Gonzaba
I am so sorry to hear about what you're going through, Jools. MG is such an unpredictable disease, and coupled with FND, is even wilder.
All I can say is to focus on what you can control. Take care of yourself and keep demanding answers.
Delora Crossley
I was diagnosed with MG about 15 years ago and my quality of life has gone down drastically. I am so terribly depressed and I feel like a disappointment and burden on my husband who recently retired from the military after 42 years. He’s ready to move forward with trips, plans, remodeling our 100 year old home to accommodate me and I’m stuck. I wish I had energy to just take a shower on my own but it’s hard with a cast iron tub (dangerous). I feel useless most of the time.
Michelle Gonzaba
Delora, I am so sorry to hear you feel this way. I don't know you but I can guarantee you that you are not useless. The right treatment for you could be just around the corner-don't give up hope! There were many times I thought I would never be able to even go to the bathroom without help, but after years of treatment, I got better. Your feelings are completely valid (I have definitely felt the same way) but keep believing things can get better.
JOHN D AUTORE
Thanks for your article. I had the same problems also. It took me 8 months of searching and no doctor was successful in diagnosing me ... even after February 2020 and March 2020 ... two months in two hospitals. Finally a floor nurse at second hospital recognized what I was trying to do .... esp one eye open...holding up droopy eyelid ... with weak left hand ...supported by right hand to see tv. I told her all the other symptoms I had (other doctor said on paper .."I was a POOR HISTORIAN" ... all the symptoms were all of MG). The nurse said "I know exactly what you have. We have patients right here at St. Joseph's Hospital in Phoenix that have all your symptoms .... You have MYASTHENIA GRAVIS !!!!. " It has been so reassuring to hear other patients stories, what they are taking, and how they are doing. The nurse got me IVIG treatments and I have been in remission for one year ... with only one CRISIS ... when my TOASTED IMMUNE SYSTEM could not protect me from left forearm SEPTIC BURSITIS. My current search question is .... do most MG SUFFERERS also have severe ONSET INSOMNIA ... I thought the Insomnia would go away once I was weaned off that NASTY PREDNISONE that also gave me weight gain and diabetes/high blood sugar numbers that I have never had DIABETES EVER. Thanks for your MG writings. It helps us new patients who have had clueless doctors in our searches.....THANKS JOHN A.
Michelle Gonzaba
Hi John, thanks for reading! I am so happy that the nurse was able to identify your MG. Personally, I have not suffered from MG-related insomnia. I definitely had sleeping issues, acne, sweatiness, and weight gain with prednisone though. Maybe someone reading this column is dealing with or has dealt with insomnia.
I'm so glad our columns are a help! We also have forums on this same website if you would like to speak with other people with MG. Thanks for commenting!
Russ Hanson
When I had double vision I too wondered about driving. As I had two friends (not with MG) who each had vision out of one eye and it had developed later in life, I asked them about it. They assured me that although depth perception was gone, driving was something that was OK with only one eye. So I drove very carefully at first with one eye and then got reasonably adjusted to it. However, sometimes I had normal vision and the transition from normal to one eye made adjusting worse as I really noticed the difference. I would say that one-eye vision seemed about 1/3 of two-eye vision when driving. Then I found out another workaround. If I tipped my head far back and looked ahead with my eyes at the bottom of their range, the double vision went away as long as I held it that way. And so when I drove and approached an intersection of any complicated situation, I tipped my head back and saw normally through it. I couldn't do it all the time as my neck wouldn't cooperate, but it certainly helped. Eventually, immune suppression worked and my DV disappeared. It was one of the most annoying features of uncontrolled MG, especially when sometimes it was normal but most of the time it wasn't. I also realized that my ptosis allowed me to do one-eye vision without patches as one lid wanted to be shut anyway. I could choose the eye that went closed.
Michelle Gonzaba
Hi, Russ! Driving was something I took for granted my whole life, so when my double vision occurred, I didn't know what to do. I also tried different positions of my head to see if my vision would get better-it sounds like you had more success than I did! Thanks for reading and commenting!
Dawn Richards
Great article! I was recently telling someone that I live in fear also. My fear is not knowing when to head to the ER for help. At times my vision goes completely crazy, my eyes flutter and I cannot swallow. How do I know if I really can't breathe or am I just scared? I do have to say that two weeks ago I had a thymectomy and my symptoms improved almost immediately!! I went from taking Mestinon about every two hours to only twice per day. There is hope!
Michelle Gonzaba
Dawn, I am so happy to hear that your thymectomy has helped! I can relate-I even go as far as to say my thymectomy saved my life. And I totally agree about not knowing whether I am truly sick or just freaking out. When I had a minor flare-up (slight weakness in my mouth and left eye) I flipped out. I thought that I was going to go through everything all over again. Luckily, I just needed to get back on Mestinon for a little while and all was good.
Keep up your positivity and thank you for sharing your story!
Bernard Schwalbe
Do you have a physical address I can send a letter too. I truly dislike using a computer (age 76). I would truly like to write about my wife's history and our 52 years together. Yes, we're both still here. Thanks.
Michelle Gonzaba
Hi Bernard! Unfortunately, we don't have a physical address. I completely understand about disliking computers but if you can, I hope you can share your story here or on another myasthenia gravis column. Thank you for reading and commenting!
Carol
I was diagnosed with ocular MG in 1917 at Mayo.
So far it hasn’t progressed to my other muscles. However The doctors say. I worry every time I ache or hurt somewhere. I have arthritis & a bad spine also.
Now a doctor says I might have my Myositis instead of mg. I’ve tried prednisone, azithroprine,Ivg infusion, cell Celcept & mestinon. Nothing seem to get better. Doctor took me off mestinon& cellcept in may.
Sill hurt, don’t know if arthritis or mg causing muscle pain & dizziness.
What can I do next?
Jerry gach
I have stopped fringes sorry for myself. When I read what others are going through. I used to see someone walking easily and envy them, now I am grateful that I can even walk- I dont like mg but at least I’m optimistalu on top of it
Michelle Gonzaba
I completely agree Jerry! We must be grateful for what we have and stay positive. Thank you for reading and commenting!
Gina
I have MG now for more than 50 years. I have had every symptom throughout, however, swallowing and speech difficulties were severe. Initially, I was taking mestinon and prednisone and five years in, a thymectomy. My MG is stable and does not fluctuate so I do quite well but my swallowing muscle gets weak at times and food gets stuck. The thymectomy helped and I have not taken meds in over 20 years. I am very grateful for this improvement but it took several years to get to this point.
Lynn
Hi there, my neuro added prednisone. . No pain in my body anymore.. just check your intake as it causes moonface if taking too much. I take 2 a day, but brought it down too 3 every 2nd day now. Please be carefull, and consult FIRST first with your physician first PLEASE !!!!!
Jonathan D AUTORE
In a reply to Douglas ..... I too had fears of choking ... every time they wanted to do a new test and forced me to lie flat on my back and be still. So they gave me ANESTHESIA to stop moving ... not realizing I had MYASTHENIA GRAVIS ... and my breathing was already suppressed and weak .... so I did not come out of the ANESTHESIA and the nurse had to call a CODE STROKE so that they could resuscitate my limp body.. Then I too caught not one but THREE types of PNEUMONIA and lost my hearing for 4 months due to ANTIBIOTICS dangerous to MG patients.
SO GOOGLE, check MG sites such as this, and learn from your MG DOCTOR ... what is SAFE MEDICATIONS for YOUR BODY ..... and hold your ground .... when other doctors suggest something unsafe to yourself as an MG patient. Also because we all must take about 2000 mg of immune suppressant drugs every day, be aware of how you must protect your body from infections ... as some ANTIBIOTICS can make your even SICKER than you already are. So keep your lists of your own meds .... and "dangerous to take for MG patients" med lists with you at all times ..... as well as wear an MG alert bracelet .. in case they sedate you for tests and compromise your breathing and your ability to proclaim your disease and/or symptoms ...... like happened to me BE SAFE AND BE EDUCATED.