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My Shared Experience – Newly Diagnosed
I waited for a couple months before adding my story to this forum. I am placing this out there in hopes that it may help someone else with this disease as other’s inputs helped me.
About me: I am a retired 65 year old Male. I’m retired United States Air Force and a retired local County Government Civil Servant (CTO). I have been married for 44 years. My health for the most part has been great other than needing to shed a few pounds. I made sure to have my annual physicals, dental and vision preventative exams and I was fortunate in that I did not have to take any medications for anything until now of course.
My GMG Introduction: On August 15, 2024 I woke up with a sagging left eyelid. That was the only initial symptom I had. We were leaving on a cruise that coming weekend so I made an appt. with my Primary Care Provider (PCP) to make sure I didn’t have the start of pink eye or something. It was initially thought to be some sort of aggravation swelling so I was put on steroid drops for a week. Note: I was under no stress, had no injury and no known infections.
During the last two days of our cruise I noticed swelling in the lower right side of my jaw and mild tightening/weakening of the mouth. I was scheduled to gave dental work done after we got back and assumed it was a result of possible tooth infection.
On September 3, 2024 my dentist confirmed an infection and placed me on antibiotics. Fortunately I wasn’t in any kind of pain during this.
On September 4, 2024 I had a follow-up appt. with my PCP for my eye and they in-turn referred me to a local ophthalmologist for further examination.
On September 10, 2024 I had my appt. with the ophthalmologist. After not being able to determine the cause of my nearly closed eyelid they wanted to rule out a stroke or aneurism immediately and had me enter the local hospital via the ER. I stayed overnight and had every conceivable test done to include CT scans with and without contrast and MRI of my neck and head. I left the hospital on the 11th and all reports were normal.
On September 18, 2024 my dental surgery was successfully completed.
Note: during this several weeks my mouth got worse and I had double vision when using both eyes. My eyelid issue actually changed eyes. My symptoms however never went beyond my eyes and mouth.
On September 19th I woke up and there was a marked improvement in my symptoms leading me to wonder if this had something to do with my tooth infection.
For the next several days my symptoms came and went, some days better and some worse.
On September 24th a the request of my ophthalmologist I had blood drawn for a myasthenia panel.
On October 15th my ophthalmologist confirmed myasthenia gravis and an appt. was made with a neurologist.
On November 5th I had my appt with a neurologist who was specialized in myasthenia gravis. He confirmed that I did in fact have Generalized Myasthenia Gravis. After going through all available options he put me on Pyridostigime Bromide (3 times daily), Prednisone, Calcium & Vitamin D2 supplements. I would be on this regiment for a couple weeks while waiting insurance to approve my Vyvgart infusions. The Vyvgart seemed to be the best option for my case. At the request of my Neurologist I had another CT Scan with and without contrast to determine whether or not I had an enlarged Thymus Gland. (I learned that if I did they could remove it and then I would probably be done with the whole process)
On November 6th I started the medications and within one hour noticed an immediate improvement of my eyes and mouth. I have been able to successfully manage my symptoms now for 12 days and am at about 70% normal which I would take any day given what GMG does to you. My vision and eyelids are fully restored. My mouth has its ups and downs but not anything like it was. I still have to pay attention to what and how I eat but not to the same level as before the meds.
I start my infusions on Wednesday, November 20, 2024 and we will go on from there.
Summary: during this process I was on a soft food diet and had to pay attention to every signal my body sent me and still do. I did lose 34 lbs during this process which was needed in my case. Here are things that I learned:
- Make sure your healthcare professionals know what the heck they are doing. Challenge them, ask them questions and make sure you come away comfortable with knowledge about what you’re dealing with.
- Know your body’s limitations, and accept assistance from your friends and family.
- Don’t quit the things you like doing just modify as needed. When I go to restaurants I let the staff know that my speech may get screwed up and that I have to eat very slow for instance. At our VFW I just let everyone know I’m not winking at them and you may not understand what the heck I’m sayin but gonna say it anyway and they all get a kick out of that and are at ease.
- Pay attention to your calorie intake because it’s easy to not get enough through the inconvenience of GMG; food processors can be your friend for sure.
- Rest has an enormous impact on GMG symptoms.
- Drink a lot of water.
- Use eye patches when and if needed until symptoms subside. I even found some that slip over my eyeglasses so didn’t have to wear the one around my head.
- Stay relaxed!!!!!!!!!! This is extremely important as tension worsens all the symptoms. When eating make sure you always have a glass of water with you. If your mouth goes sideways DO NOT PANICK! If you’re breathing you’re ok, rinse your mouth out with a sprayer if you have to and relax for a moment. Your mouth will calm down. Easier said than done but……
- Frame of Mind is very Important. Do not get frustrated with the “why is this happening to me syndrome” cause you’re not gonna get an answer. Like I said earlier I am in good health. I know my body well and monitor myself at home. No, I don’t workout like I used to nor do I eat a bunch of health food and such. But damn, I wanted to know why I got this and what could I have done to prevent it. (I told my family that here I am at 65 in great health and all f….d up lol). Then I had a Facebook notice come up about a little 8 year old nephew of some friends of ours that we’ve been following that has been battling cancer and associated roadblocks for the last three years with a smile and determination on his face. At that point I have no complaints, I’ll just let God handle it and make the best of what I got.
In closing, I’ve only been dealing with this for 86 days thus far but hope this helps someone that may just be beginning to deal with this.
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11 Replies
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Glad you are doing better!
Did anybody try DMSO?
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On the 20th I started the abdominal Vyvgart Hytrulo qvfc 180 mg-2000 units/mL 5.6 injections. Parallel to the Bromide and Prednisone. So far no side effects at all and increasing improvement mouth muscles. My eyes are totally clear and strengthened.
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I have also been dealing with the diagnosis of generalized Myasthenia Gravis for the past six months. I was initially concerned with adding my comments to this forum as others have been suffering with MG for a much longer period of time and oftentimes with much more serious symptoms. However, I have found that experiences you may have might actually help someone else.
There is one fairly unusual circumstance with my MG diagnosis. My wife for over 58 years was diagnosed with ocular MG about seven years ago. We deal with four neurologists who stated they have never had a married couple who both have MG. I thought they might want to explore this deeper but it did not seem to be anything more then an unusual fact and we moved on.
I am an 81 year old male; medical conditions are sleep apnea, AFIB, blood pressure, cholesterol, all of which are under control; active golfer. Prior to the onset of MG symptoms, I had lost 35 pounds from better diet significantly reducing alcohol, sweets, carbs, etc. and had not felt this good in a long time.
In May 24, 2024, I started experiencing double vision. I visited an ophthalmologist on June 7 and she thought the problem was either MG or possibly a brain issue from a fall. I did have two falls, one in 2/23 and one a few days before double vision started. A brain MRI was done on 6/12/24 and there were no problems noted. On 6/20/24 I had the blood test for MG and the results were received on 7/3/24 with a 50 for the ARB Antibody.
On 7/18/24, I met with an Ocular Neurologist who prescribed Mestinon, four daily of 60mg. This cleared up the double vision and droopy eyelids in a few weeks. Other symptoms also started to appear primarily in the spine continuing up into the neck. It was becoming more difficult to walk in a full upright position as I seemed to be hunched over. I continued to play golf three times a week until July when the back pain became too severe.
On 7/24/24, I met with the Muscular Neurologist who confirmed the generallzed MG diagnosis. He prescribed CellCept starting at 500mg twice daily and increased later to 1000mg morning and 500 evening. On 7/29/24, I had the CT scan of the thymus which showed no problem. In August, the ocular issues were much improved but the back and neck pain were much worse. Also had difficulty breathing under exertion, standing erect, laying flat on a bed, unable to walk even moderate distances, could not hold head upright when walking and balance issues. In an internet search, I came across Dropped Head Syndrome which pretty much mirrored the symptoms I was suffering. The Neurologist started me on Prednisone 20mg on 9/3/24 and I also started deep tissue physical therapy on the back, shoulders and neck. The spine issues improved significantly in September and I started playing golf again in October. I also started the IVIg infusions with daily infusions for five days followed by monthly infusions.
As of the end of November 2024, my noticeable symptoms are twitching eyelids, a feeling of heavy eyelids, raspy/weak voice, lower stamina, insomnia. I have reduced the Prednisone to 2.5mg daily. Still taking the Mestinon and Cellcept prescriptions and the monthly IVIg infusions. I feel I also have been extremely fortunate in finding neurologists who are extremely knowledgeable in MG and are very reachable and approachable whenever needed. My wife having MG previously was somewhat fortunate in that I got into the same neurology practice. I know from reading many of the comments, medical expertise in MG can be hard to find.
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Rocky….I was diagnosed in April 2020. Your twitching eyes are most likely related to the Mestinon. I take it when needed and notice that right away. When I don’t take the drug, I don’t have it.
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I really appreciated your attention to detail with your timeline. I was diagnosed with generalized MG in 2020 and had a thymectomy to no avail. I’ve been on Soliris almost ever since and it has saved my life. You did not mention any initial symptoms of muscular weakness in the arms or legs or aspiration that I experienced along with drooping eye and double vision. You were fortunate, as I was, to have an opthamalogist diagnose you so quickly; folks can go months or years without a diagnosis. Since 2020 I have aspirated a couple of times to the point of blacking out; what saved me in each instance was transcendental meditation…basically calming myself to relax my throat muscles and resume normal breathing. I highly recommend a meditation practice for those of us with MG.
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Thanks Andy,
I do consider myself very lucky that it never moved from my mouth and eyes. Fortunately I never aspirated but came close. As you indicated, I cannot stress the importance of self awareness/meditation. I had my second infusion today and I am running at about 80% of my normal. So far all seems to be working as planned. Good continuing luck to you.
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Wishing you the best with your journey. I was diagnosed in April 2020. My best advice is to pay close attention to your symptoms. It seems that you have a good neurologist. All medications work differently. They may work initially and then your symptoms might slowly return. Keep neuro very involved in all changes. It’s called the “snowflake disease” because everyone is different. Again….all the best.
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Thanks Lynda,
I will always be self-aware with this disease and not take anything for granted. Of course I say this in a healthy positive air, not paranoia..
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TO JQUEST:
Thanks so much for sharing your experience and in such a detailed way. I do hope you don’t have a thymoma. My wife had one and had the surgery to remove her thymus. Its been over 4 years and her MG has been 100% under control with both Cellcept (Myophenalate Motifil) and IVIG (Gamaguard) every 8 weeks and now she may be able to even stop the IVIG completely and just stay on the Cellcept. Unfortunately, just recently my wife was diagnosed with esophageal cancer at the GEJ junction and right now her prognosis is not good. However, she’s still undergoing tests and we’re hoping to get some better news going forward. Good luck to you on your MG journey.
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Hi Ron,
Thank you. It appears that I don’t have thymoma. I’m glad that your wife did well after surgery and am sorry to hear about her recent esophageal cancer diagnosis and hope they are able to eradicate it with minimal impact. Prayers are with y’all!
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Thanks so much. We’re hoping that these prayers from you and others and our good doctors will allow my wife and I to have more enjoyable years together. I am very grateful to be married to Karen for going on 52 years and other than her MG and several skin cancers, she’s been very healthy. And her MG has been completely controlled and I wish the same for you and all the others on this Forum who have MG.Happy holidays to you and them.
Ron
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