Now ... I have ummed and ahhed as to whether I should post the following on here. My main reason for not is giving people false hope. We all have enough on our plate to deal with! However, it would be great to hear other people's opinions. So I am going to keep this as brief (if that's possible!) and let you come to your own conclusions.
Some of you will probably be aware of this, and have been keeping quiet like me, but there have been some potentially interesting developments based on anecdotal evidence in the NP001 Phase II drug trial.
The developments are improvements or a levelling off of symptoms in some of the patients participating in the trail. To get up to speed you need to read the following thread on the ALS TDI website:
Ok ... there are 58 pages of it but you really need to read it all to get a full understanding of events up to this point in time. Some of it is quite hard to digest (unless you're a Bio Chemist!) so I tend to move on to the next post. However, if you want to fast forward ahead to the juicy bits, view the link below by HappyPhysicist:
http://als.net/forum/Default.aspx?g=...93&p=30#334628On the second day of infusions I was depressed because I thought I wasn't on the drug. I felt no effects. I have heard some felt extreme fatigue a few hours after the infusions and I felt as chipper as a bushy tailed bunny all night after the first infusion. I was sunk by the thought that for the next 6 months I would have this darned PICC line in and spend about 25 days of my life is a hotel in Lexington, KY. The nurse brought me a cup of coffee and I worked on my laptop in the exam room. About a half an hour later I looked down at the cup and I saw that it was empty except for some coffee residue. Someone drank my coffee. I did!!! I drank it without thinking. I haven't been able to drink liquids without it feeling like I was performing a circus act in months. After that I joined the study coordinator for lunch and pushed the limit more and more by successively tilting my head back with each sip of water. (Before this I had to stare squarely at the floor to swallow liquid) Then for the ultimate test I leaned my head back and chugged the liquid in multiple rapid succession gulps. That would have been suicide a day earlier.
Also view Persevering's post on page 31:
http://als.net/forum/Default.aspx?g=...93&p=31#334676Efficacy: Substantially improved swallowing, increased tongue strength (moving food), increased tongue range of motion (eliminated food from collecting in areas, firmer muscles around lips (restored partial pucker and eliminated slight drool and leaking when drinking, blew out candles for 41st birthday in late June, couldn't at 40th!), more productive cough, increased range of motion with right arm at shoulder (vertical possible, was limited to horizontal), increased range of motion with neck (was less than full leftward, now normal), increased leg strength (restored ability to rise from sitting without pushing with arms), increased arm strength (much improved ability to sit up from lying flat and to turn in bed), slight increased leg coordination and balance (no reliance on cane for balance), greater dexterity in left hand (was difficult to sign number 3 with all fingers together, now easy), intermittent clear enough speech to talk fluently without reliance on iPad.
Side Effects: Tiredness and occasional slight headache within hours of infusion. Wake rested, but repeats at each cycle and builds up. After multiple doses, tiredness lasts a couple days and slight hung-over feeling. Fasciculation's worsen during dosing. Cannot stop smiling out of amazement!
There's more! You will also need to view the NP001 evaluation page on Patients Like Me. The two patients above have allowed their more recent evaluations to be made available to the public. The other 7 patient evaluations can only be viewed by login in.
Excited...?! Personally, I am. Yes, it could be a scam and it's only anecdotal evidence, but if you were looking for a small amount of hope to grasp onto then this could be it. The "old timers" on ALS TDI are holding judgement and rightly so. They have seen too many false promises before ... lithium being one. However, this feels genuine to me. This disease is due a significant development in treatment and maybe this is it!
And then there's the discussion about WF10 / Immunokine ... cor blimey ... I'll let you digest the above first as this post is already looking like an essay!