Robert Richardson
Forum Replies Created
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One eyed droopiness and double vision both often made me self conscious of my professional presentation. Chewing and swallowing issues are easier to hide, although I find my standing posture awkward.
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I’ve had no coverage issues with employer group health insurance (Anthem) from diagnosis thru long term disability, less the copay; same on Medicare advantage (Scan). <div>
The VA has also been literally priceless.
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Originally prescribed 3ea 60mg daily, with the neuro recommending 4th and even 5th depending on symptom variation; currently 4ea 60 mg daily, and I have a huge stockpile backup.
I’ve always responded quickly to p tabs and don’t ever want to be without. Some relatively mild to moderate loose stool and bubble gut feeling have been tolerable.
<font color=”rgba(0, 0, 0, 0)” face=”inherit”>I’ve been on 2000mg cellcept for about 8 months now, in my </font>neuro’s<font color=”rgba(0, 0, 0, 0)” face=”inherit”> effort to improve overall strength and reduce these gastro symptoms, which seems to be working. My ADL scores are as low as ever.</font>
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Currently, and for about a year now, my worst symptoms are with chewing, swallowing and speaking. I’m always done chewing before I’m finished eating, and I slur and drool occasionally. Although generalized muscle weakness persists in varying degrees, my overall ADL scores are as low as they’ve ever been.
Certainly my symptoms have fluctuated since onset, but they’ve always impacted my eating and speaking in some way.
I often describe to others that having generalized muscle weakness feels like I just completed a workout; or that I’m not tired I just feel “spent”; or I feel like I’ve got voltage but not enough current…
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My comfort zone remains high as long as my symptoms remain low. Currently controlled with p-tabs, mycophenolate and IVIG I’m scoring low on the MG ADL and stable.
But prior to this, late onset and delayed diagnosis forced my early retirement, because I was not comfortable with the potential costs of mistakes, or hazards I’d encounter or create, while my symptoms were not under control.
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Although I have not pursued vyvgart/hytrulo, I’ve been successful with asking for “patient assistance plans” offered by manufacturers and suppliers, and some pharmacies, of specialty meds, that cover patient costs and copays. Be proactive and ask, complete the paperwork.
In addition, NORD (National Organization of Rare Diseases) is a large resource for assistance.
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Thanks for your service, and your leadership navigating this MG journey. I was diagnosed in 2016, 20 yrs after leaving a USAF career in 1996, and 25 yrs since Desert Shield/Storm deployment. So I don’t have a nexus to service connection, and was denied disability compensation in 2019, although the VA carries me on ABHOBP registry, and treats my MG.
I’m achr + with no thymoma, my gMG symptoms are mild to moderate and pretty stable, my MG ADL score stays between 9 – 12, my current daily meds are: 6ea 30mg P-tabs and 4ea 500mg Cellcept. IVIG every 90 days.
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I began IVIG at 6 week intervals, then pushed it to 8 week and then 12 week intervals before suspending altogether; went into crisis 2 years later. So I’m back to 12 week ivig intervals and doing better.
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3 years into struggling to identify what was going on, I was finally diagnosed in 2016 at 56 yrs old, while performing as Manager in a large aerospace manufacturing plant.
My employer accommodates my relatively few needs, but there’s nothing I do in this industry where the potential cost of my mistakes is too great, and this prompted my “long term disability”.
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Prior to my MG diagnosis, slurred speech had me wondering if I was having the world’s longest stroke. Mestinon and IVIg therapies have since helped but my speech still worsens the more I use it. Speech difficulties (Dysarthria) became the symptom that eventually impacted my ability perform at work (aerospace manufacturing management, technical training/instruction).
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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.
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No replies. Actually the more I think about it, it doesn’t surprise me, because prevention would have to address causes of MG that are not yet fully understood, as well as the ability to isolate, identify and diagnose symptoms early enough…
9 years since my MG diagnosis and I can’t define the cause, let alone how to prevent it. Welcome to the journey.
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Aircraft manufacturing manager, 58 yrs old when diagnosed. It became unsafe for me to operate on or around high value equipment due to doublevision, or endure a 10+ hour shift schedule due to weakness, and even communicare effectively while leading others due to speech issues. I’m medically retiring…
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Got my 2nd booster today (all Pfizer). No side effects noticed.
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I’m 61yrs, aircraft manufacturing manager diagnosed with gMG 5yrs ago (after 2 years of troubleshooting various, seemingly unconnected symptoms).
My employer accomodation is satisfactory but my symptoms make me a liability in that environment. More specifically, my “recurring, indefinate leave of absence” protects my employment from absences due to IViG treatments, yet doublevision presents personal safety issues on/near equipment, and slurred speech negatively effects critical communication.
Since my first MG “crisis” 2 yrs ago, I’ve been away from work, on long term disability insurance. They’ll hand me off to social security when I get to 65 I’m sure…
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I was 58 years old when Iย began 2 years of chasing seemingly unconnected symptoms (droopy right eye, doublevision, slurred speech, chewing issues); a coworker said I exhibited similar symptoms as his brother, who had MG. I sought dentists, opthalmalogists, and our company psychologist to no avail. I thought I’d go visit my uncle in Tulsa (he retired as Chief of Emer Med at Oral Robert’s UMC), but he told me to go the local ER. In denial, and frustrated with myself for not being able to even accurately describe what symptoms were compounding, I went to the ER claiming I was having the world’s longest stroke. A neurologist happened to be there to recognize these symptoms and take me on…
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…and my VA disability claim is denied.
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Desert Shield/Storm veteran, and I recall “P tabs” distributed twice prior to deployment… is this incidental or coincidental that the same tabs are necessary now for my MG…?
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My double vision disappeared!
It had been one of my worst symptoms for 3 years. I’d been on IVIG (privigen) and P tabs since diagnosis.
After suspending IVIG for 18 months then going into crisis, I resumed IVIG using Gammogard, and no more double vision.
I don’t know how else to explain this, perhaps in my case the improvement in double vision seems common to the IG.
Good luck.
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Prior to my 2016 diagnosis, I even pursued dental answers for the chewing and swallowing issues…
And it was only in afterthought that I link those to MG. And knowledge I’ve gained here on this site from you folks.
But I can handle most meals if I keep it smaller (half portions?), and I do spend alot more time planning, preparing and proportioning meals for easier chewing and swallowing.
I’m fortunate in that I’ve only thought about what I’d do if and when it got worse; so far I’ve avoided a blender. Only once, a little more than a year ago, was I on a puree diet (in crisis); I keep my knives sharp and my veges soft.
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I’ve been relatively stable since early on, with daily mestinon and IVIG therapy. I’ve been unstable (in crisis) once, a year after suspending IVIG; resuming IVIG returned my stability. I’m tolerating it well but it’s still too early to tell cellcept’s impact.
Hope this helps, and good luck with your journey.
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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?