Recent content by Vivienne47

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    genetic testing

    I had no family history but got tested anyway, and 14 months later (!) found out I had the C9 mutation. It has opened up new experimental treatments.
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    I have calculated that 0.5 mg Terazosin in humans roughly equates to the 100 micrograms per kg...

    I have calculated that 0.5 mg Terazosin in humans roughly equates to the 100 micrograms per kg dose in the ALS mouse model so that’s what I’m taking now. An unexpected effect of metformin - it made my blood sugar drop and I felt very unwell, until I had a sugar fix. It’s sort of obvious in...
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    I have been taking metformin extended release for a week now. I started on the normal one...

    I have been taking metformin extended release for a week now. I started on the normal one. Ramping up dose a week at a time and currently on1500mg. So far no side effects in stomach but interesting that you mention extra twitching. I’m lying awake writing this because my bad led is twitching...
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    Hi Vic. I am C9orf72 positive and my symptoms started just like you with right foot drop about 3...

    Hi Vic. I am C9orf72 positive and my symptoms started just like you with right foot drop about 3 years ago. I now have both legs affected and pelvic muscles and am using a wheelchair. I'm trying a new cocktail of cheap available drugs based on my own research. Metformin is a MUST HAVE if you are...
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    Dutasteride and ALS

    Hi Marie. In the Uk dutasteride is available via a commercial site . Link removed] but they ask for permission to contact GP before selling and don't sell to women (it is dangerous if you are of childbearing age or have anyone in the house who is). I am getting it though a young male friend who...
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    Dutasteride and ALS

    I had a search and can't find any way to test my NFL privately. I will ask my neurologist at King's College since they published the original biomarker study. Everything is so slow in the UK. My C9orf72 result took over a year to come through. I have no obvious family history so they didn't...
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    Dutasteride and ALS

    Thanks Nikki. I will add tudca back to my combination therapy. I don't know how to get nfl tested in the UK but will monitor my symptoms very closely and keep trying to walk again. I've been in a wheelchair since last October, but can still stand and transfer.
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    Dutasteride and ALS

    It may be rash, but I have nothing to lose, so I am trying a new cocktail of cheap, available drugs (including Dutasteride) which have good rationale for use in ALS or are already in trials. I am C9orf72 so metformin is a no brainer (Laura Ranum's studies and no in trials). Just started this at...
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    Just tested positive for C9orf72 (after waiting a year or more for my result) and had metformin...

    Just tested positive for C9orf72 (after waiting a year or more for my result) and had metformin in my medicine cupboard already. I'm starting on 500mg dose and scaling up to 200mg as they are doing in the Florida trial. It's a no brainier to take this if you have C9orf72. Wish I had known about...
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    Dutasteride and ALS

    This is a peer-reviewed paper on it. Is Dutasteride a Therapeutic Alternative for Amyotrophic Lateral Sclerosis? - PubMed though no ALS models yet Sufficiently convincing for me to get some and try it. It's safe and cheap to buy. I'll left you know how I get on
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    Triumec - any experience?

    Hi LouLou, I’m 64 so feel lucky to have had a good life before the dreaded disease struck. I have no children but a lovely husband to share the emotional impact, and two very sweet terriers. It doesn’t stop me feeling deeply envious of my much older friends having full mobility and enjoying...
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    Absolutely terrified that I have ALS, any input would be so much appreciated.

    My ALS came on very quietly over several months or perhaps even years. Just one muscle on my calf not as strong as the opposing one, so I got a little muscle stiffness in the stronger muscle. Eventually i started to trip over and that was the sart of a long process of mis diagnosis for trapped...
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    Triumec - any experience?

    Hello LouLou, i have been on the Phase 3 Lighthouse 2 trial of Triumeq since January At King’s in London. They are still recruiting, I am pretty sure I’m not on placebo because I have gastro side effects. Nothing serious, but it made me nauseous if I ate after taking and caused an unpleasant...
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    Newly Diagnosed

    I have done the private prescription of Proleukin with their full knowledge. My consultant had already said he wanted to prescribe it to a sub-group of trial patients once they get ethical clearance once they have peer reviewed published data on the trial - they think it is going to have a...
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    Newly Diagnosed

    I can't find the 'Start a Conversation' link. Perhaps I don't have the right level of membership? Karen, I think you might find it helpful to connect with other PALS in the UK. I have made some new friends and we are all having to tackle the disease in different ways, but it really helps to...
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