Tom's thread- Introduction

[Tomr56]

Hi, also wanted to introduce myself.

I have not been diagnosed as yet, and am awaiting a follow up with the consultant. I have had slurred speech since March 2016, and uncontrollable fits of laughter. My MRI was clear, as was the EMG. So, I and my family live in hope that there is some other explanation.

I am aware from my GP that the possibility of PBP was written onto my records by the consultant. My slurred speech has not improved, and has in fact become worse. The outburst of laughter continue, along with other symptoms, buzzing in legs, which come and go. Having looked into PBP and ALS, I realise that there is a good possibility that it may be some form of MND. I live in hope that it may be something else. It has now been four months since I last heard from the consultant, who said he will discuss things with me in due course.

In the meantime, I have looked taken action myself. I have gone Gluten free and after finding a website, WELLBEING.COM, and am now taking some supplements which are said to help with Slowing down ALS symptoms.

I also found that there is research recently conducted by Tokyo university into an drug which is already approved for the treatment of epilepsy.

The research has shown good results for ALS symptoms when tested on mice. Human trials are to begin this year in Japan. You can go to u-tokyu.as.jp to look at this research results, which is in English as well as Japanese.

My wife has this morning found a blog of a Japanese woman diagnosed with ALS who has now been prescribed this epileptic drug by her doctor.

The drug is called PERAMPANEL, which is sold as FYCOMPA. I, or rather my wife will follow the blog, as it is written in Japanese, and will update on her progress.

Just wanted to say hi to all, and introduce myself, and share the little bits of info that I have discovered since my slurred speech started.

On a lighter note, it is saving me a fortune in Gin costs, as I now can appear completely drunk after only two Gin and tonics..

Love to all

Tom

<Tom. You might be jumping the gun. Don't give yourself a fatal diagnosis unless two specialists have done so. And frankly, I don't see a case for ALS in your post. --Mike, a moderator>

 

[ShiftKicker]

Re: Newly Diagnosed

Hi Tom-

Thanks for introducing yourself. Welcome. I've moved your post to its own thread to make sure it doesn't get buried under the posts directed to the original subject.

 

[lgelb]

Hi, Tom, it's true that PBP, which generally converts to ALS, can present with a normal EMG and that a normal MRI can be said to rule out tumors that would be another key dx to consider. So I would try to induce the consultant (followed by a second opinion of course) to diagnose you definitively so you can obtain whatever benefits to which MND entitles you, or begin treating any disease that is in fact treatable. Another reason to receive a definitive dx would be to try Nuedexta, which has shown symptom relief in bulbar dysfunction, including emotional lability such as the fits of laughter may be.

As to supplements, everyone must make individual choices in this regard, but we encourage PALS to, as at the gambling tables, to spend no more than is not troublesome to lose, as none has a strong evidence base as yet and of those that do show promise, these are best consumed individually rather than as a prepackaged proprietary mixture.

Means that are commonly used to extend quality and quantity of life, as validated thus far, are hydration, maintaining weight and nutrition (via feeding tube if necessary), treating respiratory dysfunction early with BiPAP, clearing excess mucus/saliva with other methods/devices as needed, maintaining mobility and being transferred safely with the equipment necessary, reducing stress and maintaining social interaction.

Best,
Laurie

 

[Nikki J]

Unfortunately Nuedexta is not available in the UK

 

[lgelb]

Sorry, I had not seen that the mfr decided not to market in the EU.

SSRIs and TCAs, both antidepressant classes available in most countries, have also shown efficacy in emotional lability. Tested SSRI doses have included 20 mg/day for fluoxetine and citalopram and 50 mg/day for sertraline. TCAs that have shown efficacy are nortriptyline and amitriptyline, usually at dosages from 20–100 mg taken at bedtime to minimize side effects. TCAs can also help address excess saliva.

Admittedly, it is only Neudexta and not the above that has shown hints of helping bulbar function.

If someone wanted to replicate Nuedexta, the two ingredients are available and so an equivalent formulation could be compounded there (the mfr does not have composition patents). Of course, since quinidine is not a benign drug, I would do this under medical supervision. Even DMX alone could have some benefit, since no dose/response was shown in the trials, though the idea was for the quinidine to enable greater uptake.

But it would only make sense to try the SSRI or TCA route first before moving on to compounding, if the main issue is to address laughter/crying.

 

[Firefighter58]

Hi Tom, sorry to meet you here, but we are both here anyway. Tom do not put too much faith in on line stuff, it can bite you right in the a$$.
Al

 

[Tomr56]

Thanks for the replies, advice and information and moving my post.