How to rule out Myasthenia Gravis?

[AlexM]

Hi, I yesterday asked a question about hormone. My father showed a bit of improvement after big doses of Dexamethasone. Laurel asked if the doctors ruled out Myasthenia.

Actually, they ruled it out AFTER they diagnosed my father with ALS. When my parents got the diagnosis, Mom put father in various clinics because we know that ALS should be the last, not the first option. However, as soon as the doctors saw his medical history, they said, "No, this is not ours." and just repeated the same diagnosis.

My father has had several symptoms not compatible with ALS, for example, his blood sedimentation rate is too high, which is an indication of inflammation but never happens at ALS. Nobody paid attention to that, and his disease progressed very fast.

Do you know how to rule out Myasthenia Gravis?
Thank you.

 

[BethU]

Alex, I, too, have a symptom that is not characteristic of ALS, but is found in MG. In my case, it's double vision while reading, which no one has yet explained. It is apparently just a coincidence in my case, or some sort of quirky version of ALS.

About 90-95 % of MG cases are diagnosed by blood tests. MG is an autoimmune disease, and the body produces antibodies that can be detected in the blood. The rest of the cases ... called sero-negative because they don't show up in the blood ... are diagnosed by clinical exam and the neuro's judgment.

It is always appropriate to ask a doctor to explain why s/he has made a diagnosed, and why other conditions were not tested for.

 

[KeeKer]

Beth, That must be horrible for you! Does it happen right away or can you read for a little while first?
Colleen

 

[BethU]

I read with one eye closed, and it works OK. I need to get reading glasses with prisms in them.

 

[AlexM]

Thank you for your answer, Beth. My dad has problems with vision too. He cannot read now and we were hoping it was a sign that he does not have ALS. His blood test did not show MG, so the doctors said it was ALS.

 

[BethU]

MG is *very* hard to diagnosed sometimes... as bad as ALS, and there is a lot of overlap in symptoms between the two. There was a terrific post about diagnosing MG in the last couple days on this forum. Can't remember what thread it was under, but if you do a search, maybe you can find it.

The gist of it was that there are many other tests that can help diagnosed MG. My philosophy is that until you can ABSOLUTELY rule out everything else except ALS, doctors owe it to patients to keep investigating. ALS is hard enough to cope with ... having lingering doubts about the diagnosed just makes it worse.

 

[AlexM]

I wish I had read this forum a year ago! My Mom in Russia has been fighting with doctors since Feb., 2008, when my dad was diagnosed with ALS after a 15-minute check-up. Whatever she did after to rule out other neurological diseases, was useless: they just repeated what was written in the medical history and got angry at her for asking questions.
Thank you for the link - I will read it, even though now it seems too late.

 

[John1]

At one point prior to my ALS diagnosis, one of my neurologists suspected that my speech problems were caused by MG. I took the Tensilon test which involves having tensilon fed into your veins while you read. If your speech improves, then it is likely MG. Unfortunately in my case it didn't.

 

[AlexM]

Hi John,
For my dad they did not do this: they judged by his blood test only. Now my dad cannot move at all, we do not think we should do any more tests. But my mom is still blaming herself for not having been able to make the doctors do enough tests to rule out other neuro diseases.

 

[kylisa]

My mother was tested for numerous autoimmune diseases before her ALS diagnosis. The neurologist told us that her antibodies were neg for MG.

 

[BethU]

Alex ... But my mom is still blaming herself for not having been able to make the doctors do enough tests to rule out other neuro diseases.

Your poor mom! Please tell her not to blame herself ... none of us can "make doctors" do anything. If your father has ALS, then it is what it is, and further tests won't change it. But hopefully, one of the doctors can take the time to explain to her why they are positive it is ALS and are not pursuing other diagnosed. It might help her to write a brief and courteous note to the doctor asking for reassurance that they have exhausted all other options. Sometimes it's easier to do that in writing.

 

[AlexM]

Thank you everyone,
This forum is great relief for us. My mom does not know English, I translate your thoughts and experiences to her.
It does help to have somebody, even across the ocean, (they are in Russia) to talk to. Your sincere interest and supportive response help us feel we have got a bunch of new friends!