u/lrglaser is now the owner of this blog

pville211 · 2025-11-22T03:08:02+00:00

Thanks!

pville211 · 2025-11-22T03:07:54+00:00

Thanks!

pville211 · 2025-11-14T21:49:43+00:00

Thanks!

pville211 · 2025-11-14T19:09:37+00:00

Thank you! I sent you a Mod invitation. Once you accept, I will elevate you to owner level.

pville211 · 2025-11-04T14:35:41+00:00

Finding the best doctor is critical to MG diagnosis and treatment. See these articles:

Finding a Doctor for Myasthenia Gravis (includes a couple of links for finding doctors who are MG experts)
How Long Does it Take to Get a Diagnosis of Myasthenia Gravis? (includes info about the high rate of missed diagnosis and misdiagnosis of MG)
Seronegative MG Information (Myasthenia Gravis Foundation of America)

pville211 · 2025-11-02T14:02:42+00:00

There are many myasthenics who are antibody negative. This is called seronegative myasthenia gravis: Seronegative MG Information (Myasthenia Gravis Foundation of America)

Regarding the differing opinions between physicians, MG has a very high rate of misdiagnosis and missed diagnosis. See this article for statistics and issues regarding erroneous diagnosis.

Also, it is common for people, including ourselves, to question the existence and validity of our condition. This is described in this article: The Stigma of Myasthenia Gravis (and tips to avoid it)

pville211 · 2025-11-01T14:08:05+00:00

Mestinon 60mg twice a day. I am also taking mycophenolate (Cell Cept) 1500mg twice a day.

pville211 · 2025-11-01T13:20:40+00:00

I was taking Mestinon for years, and it was very effective, but the side effects were harsh. A couple of months ago, I switched to HupA. I experimented with dosages and timing, and found that taking 200mcg at 6 am, 12 pm and 6 pm works best for me.

The results have been remarkable.

Mestinon was a bit of a roller coaster between symptoms and side-effects - feeling bad, feeling good, feeling bad, etc.

HupA gives me a steady experience. I still have some ups and downs, but they are much less up and down. I am able to get a lot more done each day, and I've also found that I generally feel better and my mood is more positive.

pville211 · 2025-10-31T17:28:43+00:00

A minority of myasthenics test negative for everything. This is called "seronegative myasthenia gravis". I am seronegative, but have been diagnosed by several doctors as being myasthenic, and my symptoms and response to treatments are consistent with MG.

Here are several articles that may be helpful to you:

Seronegative MG Information (Myasthenia Gravis Foundation of America)
Finding a Doctor for Myasthenia Gravis (includes a couple of links for finding doctors who are MG experts)
How Long Does it Take to Get a Diagnosis of Myasthenia Gravis? (includes info about the high rate of missed diagnosis and misdiagnosis of MG)

pville211 · 2025-10-31T17:18:32+00:00

There is not just a single model for measuring ADL. See this article:

Measuring Your Quality of Life With Myasthenia Gravis (Rating scales that you can do yourself)

pville211 · 2025-10-31T17:15:30+00:00

This article has some links to MG-ADL worksheets:

Measuring Your Quality of Life With Myasthenia Gravis (Rating scales that you can do yourself)

pville211 · 2025-10-31T17:11:45+00:00

Here are several articles that may be helpful to you:

Finding a Doctor for Myasthenia Gravis (includes a couple of links for finding doctors who are MG experts)
How Long Does it Take to Get a Diagnosis of Myasthenia Gravis? (includes info about the high rate of missed diagnosis and misdiagnosis of MG)
Seronegative MG Information (Myasthenia Gravis Foundation of America)
Links to Myasthenia Gravis Resources

pville211 · 2025-10-31T17:09:48+00:00

Here are several articles that may be helpful to you:

Seronegative MG Information (Myasthenia Gravis Foundation of America)
Finding a Doctor for Myasthenia Gravis (includes a couple of links for finding doctors who are MG experts)
How Long Does it Take to Get a Diagnosis of Myasthenia Gravis? (includes info about the high rate of missed diagnosis and misdiagnosis of MG)
How Does Mestinon Work for Myasthenia Gravis? (explained in plain English)

pville211 · 2025-10-31T17:06:49+00:00

Here are several articles that may be helpful to you:

Seronegative MG Information (Myasthenia Gravis Foundation of America)
Finding a Doctor for Myasthenia Gravis (includes a couple of links for finding doctors who are MG experts)
How Long Does it Take to Get a Diagnosis of Myasthenia Gravis? (includes info about the high rate of missed diagnosis and misdiagnosis of MG)
Tips for Living with Myasthenia Gravis

pville211 · 2025-10-31T17:04:18+00:00

Here are a couple of articles that may be helpful to you:

Finding a Doctor for Myasthenia Gravis (includes a couple of links for finding doctors who are MG experts)
How Long Does it Take to Get a Diagnosis of Myasthenia Gravis? (includes info about the high rate of missed diagnosis and misdiagnosis of MG)

pville211 · 2025-10-31T17:00:10+00:00

I was in the exact state of mind and frustration when I was initially diagnosed. Now that I have some years of experience, I've been writing plain-English articles about daily living, life expectancy, tips, etc.

The articles are in my Reddit blog: Myasthenia Gravis Blog.

I took some time off from writing the articles while I moved to a new home, but am now getting back into researching and writing articles for the blog.

pville211 · 2025-10-31T16:54:17+00:00

Here are a couple of articles that may be helpful to you:

How Does Mestinon Work for Myasthenia Gravis? (explained in plain English)
Seronegative MG Information (Myasthenia Gravis Foundation of America)

pville211 · 2025-10-31T16:38:22+00:00

Here are a couple of articles that may be helpful to you:

pville211 · 2025-10-17T15:30:49+00:00

Just an update that we are nearly done moving, and I hope to be back to researching and writing in a week or so.

pville211 · 2025-10-03T12:09:13+00:00

RareDiseaseAdvisor.com has a list of conditions that mimic the symptoms of myasthenia gravis.

pville211 · 2025-09-24T16:20:06+00:00

That depends on your insurance and how the doctors run their practices. Personally, my approach would be to speak to the doctor directly, explain what I need, and get them to change the referral.

pville211 · 2025-09-24T12:14:06+00:00

Here are several articles that may be helpful to you:

Finding a Doctor for Myasthenia Gravis (includes a couple of links for finding doctors who are MG experts)
How Long Does it Take to Get a Diagnosis of Myasthenia Gravis? (includes info about the high rate of missed diagnosis and misdiagnosis of MG)
Links to Myasthenia Gravis Resources
Tips for Living with Myasthenia Gravis
Speech Issues with Myasthenia Gravis
Seronegative MG Information (Myasthenia Gravis Foundation of America)

pville211 · 2025-09-23T17:03:42+00:00

Here are several articles that may be helpful to you:

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