UK trials for lithium will start recruiting soon...you maybe would like to check with your neuro or better still an mnd clinic....my diagnosing neuro new nothing about the trial, I told him about it. There are only about 220 places for it and about half will be placebo.
there is information on the mnd assoc website or Dendron, who I do a lot with...surveys, blood samples etc. I was told about the trials several months ago, but my neuro at an mnd clinic today said it wont happen for a few months, I am begining the process of assessment next week. Then my mnd clinic neuro...who treats you more like a friend than a patient...we email each other...he said not to worry if I dont get on the lithium trial as he is in research and is just going thru the process of getting another trial going,,,dont know for what , but that will be happening in about 6 months...so there is plenty going on. I have also made myself known at Kings London, where they are looking into stem cell. I will try anything to beat this thing.,,,pm me or find my email address on another post if you want more info
Dear all, thanks for your your responses especially Jenni. Regarding the trial in the UK I have contacted the trial people at King's and they redirected me back to the MND Society or my neurologist. Contacted them and they said it was only for people with ALS, not bulbar palsey which is the type my mum has. Asked the neurologist as well but not much joy there either.
I originally read about the trial in the Times. The article said that up to 10% of MND patients are already taking lithium - I'm not so sure how true this is tho' as I have also read on this site that it is illegal to prescribe lithium in the UK or Europe. That's why I asked the question to see if people were taking it. Anyone else out there taking it?
I was thinking of contacting King's again to see if they could help in any way - Jenni you say you can email your neurologist and that s/he is very friendly - would you mind giving me his/her name, I would be very grateful. I hope you get onto the trial, you must never give up!
Thanks remig, a very interesting post, at the very least it shows how small portion of the whole picture is known, or even thought about...
So if Lithium is a just trigger for autophagy, but so are many other things, like your meal pattern, why would take it at all ? Would slight "starvation" in the afternoon achieve the same ? Or Lithium is more like a cathalist, rather than a trigger, of the autophagy ?
Thanks remig. Where are you getting this information from ? I mean, that Lithium is a cathalist for autophagy, that restricting protein in a few meals in a row would trigger a cycle of autophagy, etc ?
And what are those "less problematic alternatives" to Lithium as a cathalist for autophagy ?
Thanks again to those who replied, especially remiq. I'm quite new to this chat room so if I'm not answering in the right way I apologise and don't hesitate to put me straight.
Remiq - that's really detailed information - amazing - where are you getting this from? What your basically saying, I think, is that diet and the timing of diet, especially protein and calorie intake may be affecting how the lithium works. I just thought if there are enough people out there taking it already then I could get an answer but as you say results are mixed. I know from my own experiences of just taking iron that timing and how you take it is very important.
I've read the MND Society's research website several times - there seems to be several things in the pipeline that may help - has anybody tried anything that works?
Mandles..... I saw my italian neuro at the mnd clinic in barts on Friday....he said he did not see any reason why I should not get on the trial, and I am bulbar as well.. I am going to the london chest clinic next week to start assessments of my breathing to see if I fit the criteria for the trial. You may want to look up Dendron as well (dementia and neurodegenerative diseases) the trial is a cooperation between them and mnd assoc.
My neuro said not to be too concerned if I dont get on it, as he is in the process of getting a trial up and running as well.
incidentaly, in the past few months I have managed to raise about £14,000 for the mnd association and it is being put directly into trials...so I hope I get on one
One thing with this autophagy story that does not quite seem to click is that, if we follow this logic, then periodic protein / fat interruptions in the diet should be beneficial for PALS, as they would certainly trigger more cycles of autophagy. But this seems to contradict to the experience, which says the more fat (not sure about proteins) in the PALS' diet, the better.
Hi remig, this all sounds pretty logical. So do you recommend Lithium + periodic intake of autophagy inducing drugs ? Did you try it, or discussed it with your doctor ?
BTW, my former coworker, who has neuro-muscular symptoms, on nightly bipap because of low FVC, but yet officially undiagnosed, got Lithium prescription. He said that he felt worse after what was considered a standard dose, but then he lowered the dose and says that it has reduced his symptoms; he is staying at lower dose now.