Hello to my new community!

I've struggled with unexplained fatigue for some years now, was diagnosed with thymoma and had a thymectomy, then radiation. At first my general fatigue seemed unrelated to myasthenia. Starting a couple of months ago, however, I've developed more classic fatigue. It's sometimes scary and discouraging. I've just applied for Long Term Disability.

Hello 2Fatigued: Welcome to NeuroTalk! Hopefully coming here to NT can be of some comfort & support. I trust you will find the time you spend here to be of benefit. Since you've already found the Myasthenia forum, I don't need to provide you with a link to it. I believe you'll find a lot of information here as well as support. Best of good fortune with your Long Term Disability application!

Thanks, Skeezyks.

Welcome to the forum, 2Fatigued! I'm sorry you aren't feeling well.

Have you been tested for myasthenia gravis? What do your doctors think?

Have they tested you for Lyme disease, B12 and D deficiencies, thyroid issues, cortisol/adrenal issues, celiac disease, anemia, or other causes of fatigue? Sometimes a person can have more than one issue at a time. I've had three at once! Too much fun.

Did they recheck your thymus a year after surgery? Though not common, they can miss thymic tissue and some can grow back! That's probably not the case, but worth mentioning to a doctor.

Anything else you need help with? Please feel free to ask any questions! Even if we don't have concrete answers, it's nice to talk to people who often feel the same way!

Annie

Hi Annie

Welcome to the forum, 2Fatigued! I'm sorry you aren't feeling well. THANK YOU!

Have you been tested for myasthenia gravis? What do your doctors think?
I HAVE HAD WAYYYYY POSITIVE BLOOD TESTS PLUS A POSITIVE SINGLE FIBER TEST, AND MY DOCTORS ARE CONVINCED THAT I HAVE MG.

Have they tested you for Lyme disease, B12 and D deficiencies, thyroid issues, cortisol/adrenal issues, celiac disease, anemia, or other causes of fatigue? Sometimes a person can have more than one issue at a time. I've had three at once! Too much fun.
MOST OF THESE HAVE BEEN TESTED FOR, WITH NEGATIVE RESULTS.

Did they recheck your thymus a year after surgery? Though not common, they can miss thymic tissue and some can grow back! That's probably not the case, but worth mentioning to a doctor.

THE WHOLE THYMUS WAS REMOVED, I THINK, AND I'VE HAD CT SCANS EVERY 6 MONTHS, ALL NEGATIVE FOR REGROWTH.

Anything else you need help with? Please feel free to ask any questions! Even if we don't have concrete answers, it's nice to talk to people who often feel the same way!
MY READING ON PUBMED INDICATES GENERAL AND/OR MENTAL FATIGUE IS COMMON WITH MG. IS THAT YOUR EXPERIENCE (ANYONE OUT THERE)? ANYONE OUT THERE WITH SUCCESS IN GETTING LONGTERM DISABILITY VIA PRIVATE INSURERS?

Are you employed? If so, you might be able to obtain that through them. Short-term disability is more common. If not, you can look into private companies. Or are you talking about Social Security Disability Insurance (SSDI)?

SSDI can take a while. Many people have to go through two applications or the appeal before a judge (third part of the process). With enough documentation from a doctor, however, you might be able to obtain SSDI after the first try.

Anyone else have experience in long-term disability?

Annie

Hi Annie and all,
Yep, still employed, and indeed I have possible LTD coverage through the job. Of course the private insurance company can always reject my app. But I got legal advice in preparing the app. and the lawyer was/is very optimistic.

Today I saw my neuro. She repeatedly told me I should have been keeping a symptom diary (not that she had told me to on May 1 when I first saw her.) Because I haven’t done so, it’s hard to know such crucial things as whether Mestinon is making any positive difference. I felt shamed (not that that was her goal, but shame is where I go.) I know my symptoms have rapidly increased—weakness in legs and neck especially, but exactly when and how much is what I should have recorded.
Now, symptom diary in hand (actually it’s an Excel spreadsheet), we agreed that I would increase my Mestinon from 60mg X3/day to 90 (slowly, over 12 days). I’m afraid of the alternative classes of meds (steroids exacerbate my already bad sleep problems, and immune-suppressants are outright scary-- e.g. increase chances of cancer, when I already had malignant thymoma 3yrs ago, which led to my initial MG diagnosis. The two go together, right?) I’d like to hear from people who’ve had a rough time recovering from thymectomy via sternotomy.
If increased Mestinon does not help, it’s time for IVIg.
Today the neuro warned me about exercise possibly inducing MG crisis, but I’m still well enough to resist the warning, and find plenty of support for that in the literature on PubMed. As long as I can walk vigorously in the a.m., even if I get leg weakness in the afternoon I don’t fear a crisis—but I recognize I must keep careful records of this, too. What do others think?