Is double vision a common MG symptom of yours?

[Ari Maayan]

My very first symptom of MG was major double vision. It actually was pretty funny. It was a bus that presented as 2 distinct buses in separate lanes of the street. Since then my double vision is much milder and less interesting. It’s never debilitating.

[paul spychalski]

Yes!

[Frank]

The 2nd day of double vision took me to the emergency room and within a couple weeks blood tests indicated I had anti-AChR MG. My only symptoms were double vision and droopy right eye lid.

Eventually taking 120mg of pyridostigmine every four hours, took care of my vision issues.

For several months we thought I just had ocular MG, but then I started with slurred speech and my neurologist told me that my ocular MG had progress to generalize the gravis.

My neurologist said that because I was 70 when I was diagnosed she wanted me to avoid staring as possible because of their negative side effects, especially on bone density. When summer came the heat and humidity put me in a flare and I was prescribed prednisone. I never took more than 40 mg once a day, but have been trying to wean myself off of it for over a year now. I’m down to 9 mg and reducing 1 mg every two weeks.

With my last flare, my pyridostigmine would not take care of my double vision and that’s when we increased my prednisone which my neurologist said was known to take care of vision issues. It did, and I’ve not had double vision or droopy eyelids for about a year.

When I overdo, my first symptoms are that I slur my words. if I rest, and take it easy, my slurring goes away, but if I don’t, my right eyelid starts drooping, and soon my vision goes double.

I’ve been lucky that my flares have only involved, extreme fatigue, double vision, and droopy eyelids. I’ve not had to deal with breathing, chewing, swallowing, or weakness of my limbs parts of my body so many other people seem to experience. In that regard, I’ve been very lucky.

So I guess the simple answer to Your question is: yes, is often a sign that I have done too much and/or that I am moving into a flare.

I wish you luck and will be sending healing energy to you.

Love and Light,

Frank

[paul spychalski]

Thanks Frank. Thats the exact same thing that happens to me. I take pyridostigmine and asked my Doctor about Predisone. He’s reluctant about giving that to me.

[Jack Stayton]

Frank, I could have written your message myself. However my double vision has not returned after I started taking Mestinon. I was on Prednisone for 4 months and once weened off it, my neurologist replaced it with Cellcept. I’m stable now and it’s been 6 years.

Jack

[Sally W Hardter]

Sounds like my story Frank! I was 59. Summer heat and humidity terrible for me. Mestinon was not very effective for my double vision so I was on prednisone for awhile then transitioned to Cellcept. Mainly stable these last 10 years, some weakness, trouble swallowing and talking at times but thankfully the double vision episodes are mild and few.

[cincy]

Frank, Thank you for your post! I am very new to this disease (I haven’t even had my first follow up with my ophthalmologist and neurologist’s office hasn’t called me yet to set up my first appointment). I am in my mid-70s and have had bouts of double vision on and off for 2+ years. Optometrists never once (four of them) suggested going to an ophthalmologist and when I made the appointment myself, he ordered that blood test right then. You have relieved a lot of my fear. So far, I only have the droopy left lid and double vision, thank God!

Again, thank you!

[Barbara E.]

Definitely! On the milder side, eyes that are not aligned cause blurry vision. When the misalignment increases, double-vision results. I’ve notice that it can also affect my ability to judge distance. All of this can deeply impact our ability to function on a day-to-day basis.

[Ari Maayan]

Fast forward from the first, almost comical episode of double vision. I have now had to surrender my drivers license. Thank God my wife doesn’t mind being my chauffeur. Blessings to all my MG family.

[paul spychalski]

Thanks.

[Ari Maayan]

I wanted to add one thing further regarding ocular MG. I’m not troubled now with double vision. I do have severe drooping eyelids. It’s usually the left eye. If comes on later in the day when the compromised muscles that control the eyelid gets weaker. It closes all the way and no amount of struggling can open it. Anyone else with that issue????

[Charles Karcher]

Double vision is the one symptom my treatment regimen has not been able to fully alleviate. Fortunately as long as I keep my head level looking straight ahead I have no double vision. It is only when I have my head down and look up with only my eyes do I have double vision. If that is the worst I have to deal with I can live with it.

[Buckeye]

Same here. I see two lines slanted opposite directions. Worse when I am too tired or over done it. Serronegative but did get on Vyvgart. While not helping my leg weakness much or strength, that has definitely cut down on the double vision – feel I do not notice it near as much or as strong. Gets worse as I get close to time to restart Vyvgart cycle, so I am convinced it is helping.

[Robert Richardson]

Definitely yes. Mestinon & quarterly IVIG keeps it to a minimum for me. Incidently, while demonstrating obvious diplopia, I could still pass the eye chart; no provider ever questioned my driver license.

[James McCay]

EYE PROBLEMS ARE ONE OF THE MOST COMMON MG SYMPTOMS. WHILE DOUBLE VISION IS MOST COMMON, BLURRY VISION OCCURS OFTEN TOO & IS WHAT I HAVE HAD MY ENTIRE LIFE. MY MG WAS DIAGNOSED IN 2006 AT AGE 39. I COULDN’T READ A WHOLE BOOK UNTIL I WAS IN MY MID-20’S & NEEDED ABSOLUTE SILENCE. I HAD A MENTALLY ILL MOTHER WHO RAISED ME ALONE & SHE NEVER STOPPED YELLING ABOUT NOTHING. I SCORED 12.9 ON STATE WIDE READING TESTS SINCE THE 4TH GRADE (BUT THE TESTS ONLY RREQUIRED READING A PARAGRAPH OR TWO WHICH WAS MY LIMIT)! I HAD TO TAKE FREQUENT BREAKS WHEN TRYING TO READ, BECAUSE MG WEAKENS THE EYE MUSCLES (EYELIDS TOO). BY AGE 34, MY MG CAME OUT FULL FORCE ALONG WITH DEGENERATIVE DISC DISEASE & FIBROMYALGIA. THIS YEAR I HAD FULL DNA TESTING THAT PROVED I’M SICK FROM MY FATHER SERVING AT CAMP LEJEUNE DRINKING THE POISONOUS WATER FOR MOST OF 1953-54. HE DIED FROM IT IN 2015. I INHERITED HIS ALTERED “CAR” DNA GENE. YET I STILL CAN’T SUE BECAUSE OF A DUMB BIDEN EXEC. ORDER!

[paul spychalski]

Yes it is but the Doctor put me back on Pyridostigmine again but only 4 mg, but it’s helping my double vision and balance.

[Sharon Haw]

Double vision is one of the signs I regularly test for to track the state of my MG. I sit looking at a wall and then look at the corners: up to the right, then left and then down right and left. I find my bathroom is best because it’s smaller and has plenty of vertical and horizontal lines. It’s easy to see if any line is skewed or double, and that’s my signal to take mestinon. I’m on mycophenolate but my neurologist allows me to take mestinon as needed when symptoms appear.

[steve9000]

After being diagnosed with MG and taking pred. and mestinon for 5 months I gradually weaned off all medication and did fine until last week I woke up with massive double vision. I am back on mestinon 60mg/4x and pred. 5mg/day. Day 3 of this and no change. Glad I am retired and have a wife who can drive. Kinda driving me nuts. I also ordered an eyepatch on Amazon so now I am a pirate

[Cynthia Green]

Steve, it must be the season for flares. I was diagnosed 4 years ago. Mestinon is no help. So it has been prednisone. But, it truly felt like a gift. I woke up on April 28th, 2020, with double vision. Six weeks prior we went into Covid lockdown so it took me 6 months before diagnosis and that was at Stanford. I am Sero neg. Long story short, prednisone worked but the taper to no prednisone took 3 1/2 years. My last 2 1/2 mg dose was April 1 st this year. Everything was fine until last Wednesday, I woke up with double vision again. So back to 30 mg and hoping it kicks in soon. Everyone has a story and all different.

[Robert V Titman]

I did at diagnosis

[Gary Beard]

I have Ocular MG in the left eye. About twice a year I have Dbl vision. Talk to my Nero and he prescribes 20mg of Predizone ones a day. Takes about 2-3 days to clear up and back to normal.

l.

[John]

Well Im getting quite concerned, been writing my history on this site for a while now, and I have taken myself off the steroids which have brought on the following but have gone from around 60 mg a day to 2.5 mg so over 18 months, gone down in stages but the damage is done. I haven’t had double vision for a while now and below are my latest results and told to keep a check on this and next appt not until Sept but literary daily, noticing my sight deteriorating and as I had both eyes with lens replacements a few years back it’s the right eye(driving) causing me the worst problems and now things are distorted….need to find another eye person for a second opinion.

Technician report
Right Eye
AREA IMAGED: macula. INSTRUMENT: Heidelberg. REFERENCE DATE: 7/15/2024.

Left Eye
AREA IMAGED: macula. INSTRUMENT: Heidelberg. REFERENCE DATE: 7/15/2024.

Physician report
Right Eye
QUALITY: adequate. FINDINGS: abnormal. VITREOUS: vitreomacular traction.
SUBRETINAL: fluid.

Left Eye
QUALITY: adequate. FINDINGS: abnormal. VITREOUS: vitreomacular adhesion.
SUBRETINAL: fluid.

Interpretation
Right Eye
COMPARISON TO PRIOR: improved compared to previous. ASSESSMENT & CLINICAL
IMPLICATIONS: correlate with other clinical findings.

Left Eye
COMPARISON TO PRIOR: worse than previous. ASSESSMENT & CLINICAL
IMPLICATIONS: correlate with other clinical findings.

Notes
Technician:
Diagnosis: Central serous chorioretinopathy of both eyes
Study: OCT, Retina – OU – Both Eyes

[paul spychalski]

QUESTION! Is Mestinon the same as Pydidostigmine?

[John]

YES…I believe so.

[Ken Spencer]

I have had MG now for 5 years. Ive had double vision on maybe four occasions. Very short lived and doesnt really present any problems to me

[Randy]

3 months before I ended my 2 years in the Army I was prescribed prisms for double vision, 50 years ago. Until my diagnosis of MG 10 years ago, the reason was unknown. I have been getting VA disability for MG for a couple years. MG is on a special list of presumptive chronic diseases which require a symptom within 1 year of separation. It makes sense, since MG is related to nerve gas. Nerve gas was stored at the depot I was stationed at.

[paul spychalski]

I was in Vietnam and I have MG and other issues related to AO and Jet fuel on run ways. The VA is very helpful but you may need to see,on your own, a Neurologist that deals in Autoimmune Deseases. Good luck…

[MikeS]

My late-onset MG started 4 1/2 years ago with diplopia (double vision). That lasted a few months and then receded as ptosis (droopy eyelid) set in, mostly in my right eye. Months after that the slurring and swallowing problems started, along with facial muscle weakness, as the ptosis receded. For the past 3 years I’ve gotten flare-ups of just the throat, tongue and facial muscles (no more diplopia or ptosis) which last 2-3 months followed by approx. 2 months of remission until the next flareup.

[joell]

My MG symptoms started out about a year ago with only double vision. Doctors were in denial about me having MG because my double vision presented itself first thing in the morning as it still does. Every morning i wake up with double vision and the feeling that my left eye isn’t keeping up with my right eye. I lay in bed with both eyes open until my left eye wakes up. Mestinon and prednisone keep this in check all day. Recently i have experienced eye drooping and extreme fatigue. My neurologist is treating with extra doses of prednisone. I’ve been on this higher dose for two weeks with no change.

[Harold Summers]

I have double vision but have found the simplest method for this, as corrective glasses cause refraction and distortion, is to wear an eye patch. Now I see just fine. I take Pyridostigmine 180 mg three times a day. I do not want to take more as that brings on diarrhea too frequently. I also receive an infusion of Ultomiris every 8 weeks. I am going on 76, and last year I had cataract surgery on both eyes, after which I have 20/20 vision in both eyes. Now, wearing an eye patch I have no vision problems, even when driving at night.

[miche]

Have you thought of cutting down Pyridogstamine, with Ultomiris you might not need that much. I’m surprised it’s not helping your double vision, what is it helping you with?

[Robert Richardson]

It’s my right eye that’s not straight, yet it’s clear. I can wear my patch on either eye and eliminate double vision, but lose depth. Which eye do you wear the patch over?

[miche]

My double vision is gone since I had Ivig during a crisis in March. I hate double vision. My left eye was blurry in the morning but since I started Vyvgart last month, my vision is better.

[Wayne Eisen]

Yes. What I’d like to know … has anyone had experience with Cellcept?

Thank you, Wayne

[EDWARD CLAGHORN]

I used Cell Cept for a short time after the IVIG treatments stopped being very effective. I stopped Cell Cept v quickly as it just did not help me.

[Debbie sandwra]

I am on it. Have been told it takes up to a year to work. I chose to go on it because I was so bad. I’m on month 9. I’m thinking it’s starting to work because I’m able to do my Vyvgart shots 4 weeks on and 4 off and still manage . I was not able to do that before celcept. I’m also on 5 prednisone. I’m hoping at a year it will work even better and can finally get off prednisone. It’s been 4 1/2 years on. My opinion is add it onto what whatever you are doing.

[Amy Cessina]

Mine manifests as blurry vision and not double. For some reason LED TVs (and LED billboards etc) make everything blurry for me all the time too and I don’t know why. Anyone else have this?

[Larry Boggs]

My only MG symptom is vision issues Primarily it is double vision but it is more than that sometimes it is more feeling like I am not in my environment because my vision is a little off. My double vision has been episodic. When I was first diagnosed with MG I had a 6 month period of double vision with the feeling I was in a bad 3D movie as my depth perception was very much off, My symptoms worsened for about 6 to 8 weeks from inception, then improved over the remainder of the 6 months when my vision returned to normal and remained that way for about four months. Then I had another 6 month episode followed by four months of normal vision,. That was followed by another 6 month episode. Each of these three episodes were less sever than the previous one. After the third episode I went three and a half years with normal vision before having a fourth episode. I am now in my third month of this latest episode.

I find that stress is a significant factor in the triggering of episodes and the severity of them. I take no meds whatsoever to treat the condition I fo whatever is requires to avoid stress I do not tolerate negative, problematic people in my life Through all my episodes, I have found meditation, rest, strenuous exercise and long hot showers help. I do avoid screens and reading I listen to audible books and music)

I find I am able to perform all normal functions of life and get by without anty help. am very careful moving mostly because of depth perception issues that result from using one eye My specialist says I am very lucky and better off than 95% of his MG patients I am thankful for my luck and prey it holds

[L.J. Koning]

I know that MG can manifest itself in all sorts of forms. I learned that on this website. For me, double vision was the biggest problem. After much experimentation, I have now found an approach that eliminates the double vision. First of all, glasses with prisms work very well for me. These glasses ensure that the images from both eyes come together properly. In addition, I take 1 pill Mestinon in the morning and 1 pill Adport-Tacrolimus in the afternoon. For me, this is the right approach. Unfortunately, it does not necessarily work for everyone.

[Mama]

I was diagnosed with MG a little over a year ago. So far, I have not had an issue with double vision. My initial symptoms were slurred speech and choking when trying to swallow.

[critter]

Hi Cincy,

Yes, double vision is one of my symptoms of MG. My ophthalmologist prescribed new glasses with prisms for me and that really helped a lot with the double vision. Hope you are having a good day.