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Meet Our New Forum Moderator – Shawna Barnes
Good day to all!
I’m excited to be here and to help in any way I can.
My MG journey started in 2011 when I was medically retired from the Army after I began having “weird symptoms” during a deployment to Iraq (and exposure to open burn bits and all kinds of lovely things one shouldn’t be exposed to). It took my nearly seven years of fighting and advocacy in the VA to get my diagnosis of seronegative generalized myasthenia gravis.I have an alphabet soup list of diagnosis’ but some of the heavy hitters are MG, PTSD, fibromyalgia, cervical dystonia, osteopenia, hypermobility disorder, seizure disorder, OAB (overactive bladder) and degenerative disc disease.
I live in Wisconsin with my husband of 11 years, our two doggos and two cats.
I own two businesses and help hubby run his.
I am a no BS, tough love, goofy, sarcastic, solution oriented kinda gal.
I’m also a columnist for MG News and have been writing a weekly column since January 2022. My column is called The Whispered Roar.
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19 Replies
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Welcome –
Vietnam AO – diagnosed in 2019. Currently Appealing – 2 years after my file was docketed awaiting Service Connection.
When diagnosed I couldn’t walk around the block. These days I am averaging 3.1 miles in the mornings before it gets hot. I am fortunate to be stable and able to do some things. Can’t ride a bike and am not good in crowds – too much stimulus.
Anyway – welcome.
Scott
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Hey David!
I’m pretty stable at the moment, but I’m on quite the regimen to keep me that way. I can’t ride a bike either – have you tried a hand cycle? I can do that. I’m averaging about 2100 steps a day, and working on steadily increasing it little by little.
Thanks for the welcome! It’s great to be here.
Shawna
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The hand bike would not work for me – my issue is environmental overload not physical inability. I do get physically fatigued but I take activity when I can and rest when I can’t.
I could ride a bike in a large parking lot, but the road side goes by too fast I lose focus and start to stammer and tremors begin. I have to hold my wife’s’ elbow when we get into crowds. I did try a recumbent but it didn’t work either. I move through life in slow motion in real time.
I overdid my introduction to Walking (for exercise). Was averaging 3.4 miles day. Overdid and am now recovering from Achilles Tendonitis. Will start to walk again soon. Will take it a bit slower. 2 – 1 1/2 mile walks. One in the morning and one in the afternoon. Maybe I should try the bike again.
Again – welcome.
Scott
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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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Hey Robert!
Thanks for the welcome. I’m glad to hear that you’re still being treated regardless of the nexus. I am seronegative and had a thymectomy in 2019. My thymus was hyperplastic, but no thymoma.
-Shawna
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Welcome! I had images taken of my Thymus and it showed spots on it, the Dr at the VA said he didn’t think it was enough to cause MG. I went to a Neurologist outside the VA and he said I was Seronegative. Do the spots on my Thymus mean anything??
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Hey Paul,
That I can’t say. My VA neuro said the same thing when my CT came back showing an enlarged thymus. I went to patient advocacy and requested to see a neuromuscular specialist who was familiar with MG. Once I got to that specialist, they looked at the CT and had me scheduled for a thymectomy a month later.
So I would try the same approach. Try and get a referral via community care. If your provider won’t write one up for you, use patient advocacy.
Shawna
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Thanks Shawna
The VA doc is having me go to the pain clinic in 2 weeks, so now I have more hope.
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I hope it helps.
I just completed a 3 month long pain management trial with the VA, looking at holistic modalities through their whole-health program. The nurse I had was great. Sometimes I forget other programs and options that are available to us.
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Hi Shawna-
How do I post a topic for discussion? After several years and a wide range of treatments, my wife’s employer is dropping the provider that has navigated me through this. As you might empathize, I’m freaking out at the prospect of having no access to Hytrulo or other medications for my MG. Do you have any recommendations?
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Have you tried:
https://www.healthcare.gov/see-plans/#/
Good luck,
healthcare.gov
Health insurance plans & prices | HealthCare.gov
Preview Marketplace health plans and price quotes for your area. Official government website.
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My wife makes too much to qualify but not enough to cover the current estimated price of $407,000 a year to continue with Vyvgart Hytrulo
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Hey Eric –
Did you figure out how to post a question?
If not, you can try this:
While logged in, go to “forums” in the menu at the top of the screen.
Look at the various categories, I believe the “healthcare and treatments one” would be relevant. Click on the text, as that is the link to open the forum category to see what’s been shared/posted.
Once you’re in that particular topic, in the right hand menu is a button that says “new discussion”. Click on that and you can post your question. <3 Please let me know if you need any other help on that front.
Shawna
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Eric in regards to treatments/insurance. While there are no openings now, you can get in the wait list at “THE ASSISTANCE FUND”. When approved they pick up copays etc for our expensive meds. Good luck. We always have to fear the disapproval every mew year of al the supports we get for our medication. Thank God there is support out there. There are other supports you can receive as well. I hope you get your coverage. Oh also have your doctor, infusion company help.
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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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I’ve looked into several “assistance” programs, sadly, with the same result. I will followup on the NORD recommendation. Thanks
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Thanks for chiming in and helping Eric, Robert! I appreciate it!
Shawna
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Welcome, Shawna-Barnes! Does anyone take Pepcid or like med with Prednisone? It is generally recommended for long term use, I am on low dose Pred 5mg/day for 4.5 years, age 77 but very active, MG under control with pyridostigmine 60×4 plus Pred. Been very lucky!
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Hey Bill!
Yes, after a while I had to take Rx strength pepcid. It’s called Famatodine. It definitely helps with the acid and that feeling of my stomach eating itself if I take my meds on an empty stomach. 🙂
Shawna
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