[Peter Livingston]

Getting to know your own MG is important. I have yet to find any MG person who has exactly the same symptoms in the same way as another MG patient. You will need to get to know your own response to the various factors.

 

Getting to know your own MG is important. I have yet to find any MG person who has exactly the same symptoms in the same way as another MG patient. You will need to get to know your own response to the various factors.

 

I have had MG since 2014. Diagnosed in 2015 with a sign MOMA and immediately had a thymectomy. I was placed on Mestinon 60 mg four times a day and had rapid improvement to a point .  My difficulty in breathing, swallowing and ptosis improved dramatically. But the fatigue and upper body weakness have continued.

 

My difficulty in breathing, swallowing and ptosis improved dramatically. But the fatigue and upper body weakness have continued.

 

With each successive year post thymectomy I was able to reduce the Mestinon to as low as 30 mg three times a day.  I reached a point where I was only taking 30 mg once a day when needed when I got my first Covid vaccination. No problem following the first Covid vaccination. The second shot threw me into a near crisis state. My neurologist began IV I G with a five day loading dose infusion followed by once a month there after. I noticed almost immediate improvement just as I had post thymectomy and starting Mestinon.

This was followed once a month there after. I noticed almost immediate improvement just as I had post thymectomy and starting Mestinon.

Some may think I’m crazy, but I went ahead and got the booster for the Covid vaccine while I was taking IV I G and had no further negative response .   I figured if I was going to get Covid I wanted to do it having been fully vaccinated so that I could minimize that infection and not complicate my MG.

I am now on IV I G every seven weeks, no Mestinon, and I’m traveling internationally without complications.

Yes it has changed my life but by paying attention to my own symptoms, and managing difficult times with Mestinon, and a regular routine of IV I G my quality of life is near normal,

I hope your experience in learning about your own MG has a good course.

[Peter Livingston]

Travel is fine as long as your condition is stable and you can do some self titration (educated experience and doctor advised) of meds.

impirtant thought:

1. Ate you traveling to a remote location where urgent care is not easily obtained?

2. Know where the closest western medical care hospital is available. With neurologist of course.

3.  Advise any leaders in your travel group.

4.  As to mestinon, if that is your Rx, be aware that too much mestinon can mimic symptoms of too little mestinon.

I was diagnosed in 2015, had a thymectomy that same year, and been traveling internationally without event since recovery from surgery. I am stable on 60 mg of Mestinon twice a day or 30 mg three times a day. I carry a 30 day supply of Mestinon with me always on trips because it’s not always easy to acquire it.

 

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Presently I am stabilized on Gammaguard (IV I G)  once per six weeks.   A recent trip to southeast Asia I was delayed on return home.  By an  extra two weeks I missed by those two weeks my infusion and needed to restart my Mestinon at 30 mg 2x  per day until I return.  Upon return I had my IV I G as prescribed and dropped the Mestinon

[Peter Livingston]

Travel is fine as long as your condition is stable and you can do some self titration (educated experience and doctor advised) of meds.

impirtant thought:

1. Ate you traveling to a remote location where urgent care is not easily obtained?

2. Know where the closest western medical care hospital is available. With neurologist of course.

3.  Advise any leaders in your travel group.

4.  As to mestinon, if that is your Rx, be aware that too much mestinon can mimic symptoms of too little mestinon.

I was diagnosed in 2015, had a thymectomy that same year, and been traveling internationally without event since recovery from surgery. I am stable on 60 mg of Mestinon twice a day or 30 mg three times a day. I carry a 30 day supply of Mestinon with me always on trips because it’s not always easy to acquire it.

 

.

 

Presently I am stabilized on Gammaguard (IV I G)  once per six weeks.   A recent trip to southeast Asia I was delayed on return home.  By an  extra two weeks I missed by those two weeks my infusion and needed to restart my Mestinon at 30 mg 2x  per day until I return.  Upon return I had my IV I G as prescribed and dropped the Mestinon

[Peter Livingston]

My suggestion is get the full general work up.   Find out everything now that might be impacting/complicating your condition or future treatment. Get a really strong basis for going forward.

 

[Peter Livingston]

I had an MG flare after 2nd Moderna shot.   General weakness and difficulty breathing, swallowing, talking, droopy eye.   All the original pre Dx symptoms and pre thymectomy.  It all returned.   But, I kept thinking what if I had Covid and had a flare?    That outcome would likely have been worse.

Ny neurologist started me on IVIG home infusion.  Immediate and dramatic improvement.

on Sept 1 i got the booster.  No problems at all.  So in my mind I have covered myself as best as I can from severe Covid which could make MG severe.

[Peter Livingston]

• <span data-preserver-spaces=”true”>What were your prominent symptoms before surgery?
  Severe Ptosis left eye.
  Severe upper body weakness   Breathing difficulty especially when lying down. Some swallowing difficulty.  Extreme fatigue aggravated by heat</span>
• <span data-preserver-spaces=”true”>What treatment were you receiving right up until surgery?  Mestinon 60mg TID </span>
• <span data-preserver-spaces=”true”>What type of thymectomy did you receive? Open.  My thymus was quite large and much too large for endoscopic attempt</span>
• <span data-preserver-spaces=”true”>How long after your MG symptoms begin did you have surgery? 5 months</span>

Now, 6 years post op, I had become symptom free even in heat and I had dropped Mestinon.  Then I got Covid vaccine which start an immune response and my MG symptoms returned in full.  Back to Mestinon which brought marginal improvement.  Then IVIG and by day 2 of loading dose brought dramatic improvement. Now having IVIG  monthly for 6 months prescribed – 2 months in and I am virtually symptom free again but my neuro has me on Mestinon 60mg in the morning and 30mg two times during the day.