Correct diagnosis?

[Newly]

Hi all ... I know part of FND is not accepting it as a diagnosis .. but am wondering how many people were given fnd as a diagnosis and then found out later that it was a wrong diagnosis. Thank you

[Tilly64]

I was told FND then another neurologist said it most definitely wasn't and said I had progressive myelopathy but that's still the same as not knowing. I still don't think it's FND but more like MS. The only reason he said it's not MS was because my lumbar puncture came back within normal limits. So frustrating. X

[kotovasv]

I was misdiagnosed with FND and later was found to have an atypical myasthenia gravis. If I was not taking antimyasthenic drugs around the clock now, I would have been almost completely paralyzed.

[Shadow35 in reply to kotovasv]

Hi. I'm wondering how they find out. I have a pstosis and temporary weekness and a lot of fatigue. My neuro test me for acetylcholine and it came back borderline so he said that it cannot be it. But on the official website for myasthenie it said you cannot rule it out because of it. You need to test again and again for one year to be sure. What test did they do for you?

[kotovasv in reply to Shadow35]

Hi. Of course, you cannot rule it out by a single acetylcholine test, since there are different forms of myasthenia with different receptors involved, not only ACh receptors. Another well-known form is myasthenia with MUSK receptors (that is another test), and there are other receptors, too, and there is seronegative myasthenia, as well, when no blood test can show anything. Moreover, there are a number of myasthenic syndromes. In your case, they must do at least EMG testing (two types - repetitive stimulation and jitter). In my case, all testing was negative, except for the trial of specific anti-myastenic drugs (neostigmine and pyridostigmine). Go ahead and ask a referral to somebody who knows about myasthenia. While they are speculating on what you do not have, you lose a valuable time. In my case, they lost so much time, the disease progressed to a severe form, and I am permanently disabled. Good luck!

[Shadow35 in reply to kotovasv]

Hi. They did a emg for my eyelid but i didn't have spasm at that moment. It came back "almost normal" like all the test i did. But they didn't test for other than acetylcholine.

[Shadow35 in reply to Shadow35]

It's just that i'm pretty sure i have to problem. One like a weird allergic reaction and maybe myasthenie. Do you often like 1-2 time a month with your own saliva. Some days i can move almost like my normal but i pay for it the next and sometime just passing the lawnmower and i need to rest for 2 hours. Because it's not stable he dismiss it.

[kotovasv in reply to Shadow35]

I have read your story, it seems difficult symptom-wise, you have a variety of different symptoms, and other medical conditions, too. I think, it would be a challenge to find the truth in your case. Mine was much easier, I had just one symptom - muscle fatigue and later progressing muscle weakness, and still I was largely dismissed by doctors. Even when the weakness became permanent. Unfortunately, it does not matter much, what and how you feel, until they see something conclusive with the tests.

[EnglishIslander FND Hope Volunteer]

From our information so far it seems to be a fairly low percentage of mis-diagnosis, however still significant. Also the diagnosis itself is not really a diagnosis, more an "umbrella" term sometimes used to give us patients something to work with.

If you like to join our Facebook group they can give you much more support and information. Go to FNDHope.org and click on the Join Facebook Group icon.

Best wishes. Duncan