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?

Not everyone with MG has a thymoma. And not everyone with a thymoma has MG. Weird, I know.

I am still going to caution you!!! Mestinon is a helper drug, which does nothing to address the immune attack (even though ONE study was suggestive of that). In the summer, you can go from okay to a crisis in a very short period of time. If you must exercise, why not do that indoors with a fan blowing on you? Don't push MG or it WILL push right back!

Also, MG is really odd. You can do something one day, be weaker the next and be even weaker the day after that. You can't always tell how much weaker you will become from an activity. Why not try walking every other day or 3x per week? And then have a nap afterward!

As I say like a broken record, MGers can become so weak so slowly that they might not notice how badly they are doing. That's what happened to me in July 2005 during my MG crisis. By the time I made it to urgent care, I could barely walk, stand, breathe well, and couldn't squeeze the doctor's hands. After which I was promptly admitted to the hospital.

MG muscles also become weaker while sleeping. That's why a consult with a pulmonologist is so important. They can do baseline readings to compare to ones if you become worse. They can also do an overnight oximetry to see how you are doing at night (to make sure you aren't hypoxic).

You should know within a half an hour if Mestinon is making a difference. When I first started taking it, I near a beach. I went for a walk on the sand (pretty tough on the legs). Then I took some Mestinon, waiting and walked again. The change was obvious and dramatic. But if someone is really weak, Mestinon might not help as much.

Taking a higher dose isn't necessarily better with Mestinon. Sometimes, if someone is active throughout the day, taking a steadier dose like every three hours can be better. You have to work that out with your neuro though.

Give yourself some time to get used to this disease. MG is very unpredictable and can fool even us veterans at times. Those newly diagnosed, and under treated, are at a higher risk of a crisis. So, be cautious!

Annie

Heed Annie's warnings! I'm newly diagnosed, young and stubborn... and currently sitting in the hospital for 11 days as I go through plasmapheresis. 😧 Even after 3 of 5 treatments, my symptoms vary day by day and sometimes hour by hour.

And as scary as a crisis is, it's kind of more scary thinking about how quickly you get used to worsening symptoms.

I went to the ER with symptoms that mimic a heart attack - cold sweat, palpitations, mild shortness of breath with slightly low O2 saturation. I was reluctant to go! I was still mobile, I wasn't struggling to breathe (I thought), just in taking a deep breath, etc. Everyone's main symptoms are different and a crisis can look different in everyone. Unfortunately, it sometimes takes experiencing something yourself to know what that point is.