Mom was diagnosed with ALS by 3 neuros. I still think she doesn't have it, or..?

[alexa00]

Hello guys! You really have a wonderful place here, and you've been a tremendous help to me and my family.

My mom was diagnosed with ALS by 3 different neurologists about 3 months ago. It started by a constant pain in the nape and shoulder, resulting to her hurting when she moved or turned her head. Then her left hand started twitching along with plenty other parts of her body, and then she started to experience severe weakness in that hand, not being able to even button up her shirt and stuff. Everyone of the doctors did their own EMGs and MRIs and so on. They all concluded the same.
So the thing is, we are from Greece, and unfortunately there are only 2 neurologists in this whole country that even though they are not experts on ALS, they have had patients that had it.
After trying to educate myself on that disease I began to really believe that whatever my mother has is not ALS, and I will list my reasons below:

-She doesn't twitch only in the place where she feels some weakness, but all over her body. One minute she feels twitches in her back, then her calf, face, hands etc.
-Her weakness is not CLINICAL WEAKNESS, and obviously her hand hasn't atrophied. After stopping her work for a week, she felt her hand getting better and better, and even today she called me saying she feels it like she did before the whole supposed ALS thing. She works out, doing therapies and currently taking Rilutek and she has regained some power after all that.
-None of her doctors said anything about hyperreflexia.

So yea.. These are my main reasons, and I strongly believe that it's not because most of the things I describe are the opposites of the MAIN symptoms. Next week, I will be visiting a doctor with her, and I will express my concerns in order to see where what his report was based on.

I'd really, really appreciate your opinions on this.
Thank you

 

[Atsugi]

If you prefer to go outside the country for an ALS diagnosis, consider one of the locations listed at Center overview | ENCALS.eu

 

[ECpara]

I agree there are some definite conflicts here....."getting better and better" being the one that jumps out. Is there any way to be seen by an ALS expert outside the country? Maybe Atsugi's suggestion above? Good luck!

 

[Andy Cap]

How in a country size of Greece can there only be two doctors with experience of ALS. I don't belive it for a second. There's roughly 3 million people living in general Athens area and I know (now that I've read all there is to know about the disease) that it affects little bit more people living in the north than southern Europe but by all calculations there should be at very least 60 people getting the diagnosis in municipality of Athens this year alone. I went to see my doctor in Helsinki, city roughly the size of Helsinki and general area half the size, and my doctor could think three specialists from the top of his head and numerous of neurologists with extensive experience of the disease and it's symptoms. Not many ordinary doctors have necesserily encountered the disease but I would say that any neurologist over the age of 45 would have encountered numerous of cases and would be VERY familiar with the disease.

Now I was talking about my own worries with my trusted secretary and she told me that her uncle was diagnosed with ALS but his family refused to believe the diagnosis as it didn't seem to match. They felt that it matched more with Lyme's disease (he had rash and some other stuff with no atrophy over time) which neurologist in question didn't agree with at all. They sent some blood examples to some laboratory in Germany and lo and behold, he did INDEED have Lyme's disease and is doing fine these days having received some special antibiotics. But this was only one neurologist, and they are humans after all.

 

[affected]

Andy go back and read the sticky please.
You have your own thread for your health anxiety and that is where your posts need to be confined as this is not a general health forum.
thanks for understanding.

 

[Andy Cap]

My sincerest apologies. I was just trying to encourage her that there MUST be someone in Athens or at very least Greece who has extensive knowledge of the disease. Greekmis the home of the modern medicine after all!

Again, my apologies.