Kiki

Thank you for the great idea to record Dr sessions. This will not only help Amanda but also other undiagnosed readers.

Kathy, you’re totally right for undiagnosed readers without a genetic mutation, there is still a lot of hope esp. when they haven’t got the full differential diagnosis: spinal tap, blood work, MRI, CT, EMG, EEG, ENG etc…. when…[Read more]

Not sure if I understand the question correctly but I thought that the videos of everythingals on Youtube are quite interesting. A lot of research but also some theories on the cause are available.

Hi Amanda,

I just read this post and keep thinking of you. I wonder how you are doing. It’s so kind of you to volunteer and help pals/ als research and as every Pals you deserve the best treatment.

I know sometimes life is cruel and living with the knowledge of having a mutation must be very hard so it’s totally normal to tear up at times. But I…[Read more]

Hi @Georgi,

Thank you so much for your informative response which I just saw unfortunately but I’ll try to check the lab you recommend.

As Germany is very conservative genetic testing seems to be a bit problematic without a diagnosis of ALS in ones family though I’d spend the 85 €. When you have a diagnosis financing the genetic test depends o…[Read more]

Hi Lisa,

Not sure if this is good or bad news. A new neuro will perhaps have a different approach and better idea of what might be wrong.I hope that you are right and have a certain form of neuropathy or age related atrophy/ myositis?. Guess a whole spine mri seems about right to rule out other things. Though when an emg Shows chronic…[Read more]

<b>Hi, I read about the supplement berberin which has similar effects as metformin. Also vitamin E, D and B might </b><span style=”font-size: 16px;”><b>delay</b></span><b> onset. Although I would always talk to my PGC before taking any supplements due to the mentioned side effects/…[Read more]

Very intersting article. My granddad had FTD and in the end he could neither swallow nor speak so even the symptoms are kind of related to ALS but with the science behind this makes even more sense. Though I guess finding a super pill for both neuro degenerative disorders seems far away to me. ALS itself seems like multiple disorders at once that…[Read more]

Thank you for your response Lisa, I really hope that you will receive answers this Friday. Guess the questions you ask depend on your Neuro. If you are still open for other causes he will surely not put you in the anxiety corner but with a confirmed atrophy and your increasing symptoms you have definitely the right to ask for another Emg.

The…[Read more]

Hey Lisa,

I just came across your thread. Just wondering how you are?? At the moment I am also in the middle of getting diagnosed. Like you I still have a little hope left. Also I read a lot about the Emg. Since you wrote that you had several dirty Emgs I am wondering what takes neuros so long to come up with a diagnosis. I read that with 2…[Read more]

Hi Deborah,

I also haven’t been diagnosed yet and was wondering whether you found out if it is ALS ? of course I hope it’s sth else more treatable.

Best wishes,

Kiki

Hey there,

At first thank you for providing this forum and helpful advice/studies. I am just wondering how people get tested as the whole ALS topic is quite new to me.

We have FDT ( granddad, mom) in our family history but no ALS. At the moment I have strong symptoms but no confirmed atrophy. I’m quite young (29yo). Should I get tested for the…[Read more]