Newly Precisely Diagnosed

[adincyurek]

Hello from Turkey,

My mother diagnosed last week as ALS patient. In July 2015 first diagnose was MND (motor neuron disease). Since that moment, she has taken Rilutek. At beginning of this April, a blood test was done (westernblot). And the neurologist said she has 99% ALS.

She has a weakness in her muscles. Difficulty of speaking (maybe because of Rilutek itself)

I'm looking for a better drug as you guess.

 

[Nikki J]

Sorry about your mother. Riluzole does not cause difficulty speaking. Why do you think so? If she says she gets numbness is her mouth if she does not swallow it fast enough that is normal and harmless. It goes away quickly. Unfortunately speaking issues happen as the disease progresses. The only prescription medication I might suggest is Nuedexta if it is available in your country. She can take it and riluzole. It is not either or. Nuedexta seems to help some people temporarily with bulbar ( swallowing, speaking issues). Good luck

 

[Nuts]

I'm so sorry about your mother. As Nikki says, there is no other medication that does what Rilutek does, but ALS can and will cause difficulty speaking.

I loved for three years in Turkey (at Incirlik AB, near Adana) and loved your country. The food is delightful and the people very hospitable. Do you have an ALS specialist there?

Becky

 

[affected]

Sorry to welcome you.

As Nikki suggested probably the only other useful drug you could look at is Neudexta if you have it there. We don't have it in Australia, I wish I could have tried it with my husband.

The speaking problems are part of ALS I'm afraid.

 

[adincyurek]

Dear Nikki J, I checked prospectus of Rilutek, as you write there is no symptom of difficulty in speaking. Unfortunately you and Nuts are right that it's the sign of ALS. The difficulty of speaking comes from half paralysis of soft palate and tongue. I could upload here a picture that shows clearly the asymmetry of uvula palatina of my mother! (First symptom in July 2015 was difficulty of speaking. I'm confusing unhappily symptoms of the disease and side effects of the medication as I think my mother's condition all the time. Sorry for that.

Fatigue, especially during short uphill walking, is obvious maybe because of ALS or side effect of Riluzole.

I'm checking the presence of Nuedexta in Turkey, I'll ask to the doctor if it's possible to start to take the medication. Thanks for your all valuable advise dear affected, Nuts and Nikki J...

Nuts we are from Adana actually. My mother and father were born there. I live in İstanbul, they live in Ankara. In Ankara there are specialist neurologist about MND and ALS. One of the best we know is Mr. Ersin Tan from University of Hacettepe. We will consider his advises and treatment protocol. But if we (me, my father and my brother) won't satisfied, we will look for better treatment options or medication etc..

 

[affected]

Again fatigue walking is an ALS issue, not a side effect. Yes some people find they feel fatigued at first on riluzole but her breathing is probably being affected and so walking, especially uphill will cause her to have problems breathing well, and so she fatigues.

It could be worth checking out routes to walk so that you can help keep her out and about but not wear her out - PALS should not try to do too much as fatiguing the muscles can make them weaken even faster.