Jan 5, 2012 (Started Jun 20, 2011)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    Mild (for Overall) (fatigue, muscle twitching (fasciculations))
  • Adherence
    Always
  • Burden
    Not at all hard to take
Advice & Tips: It has now been 8 weeks since my last infusion. In the past 4 weeks I have noticed a significant decline in my state. My speech is considerably worse and my left leg is showing signs of weakness to the point that my gait has changed and I feel a little off balance. My swallowing is also worse. I now have to drink water in very small sips to prevent myself form choking and I find that I am having difficulty swallowing food, even choking on food on occasion. It feels to me that my progression has now picked up where it left off just before I started the NP001 infusions.
Cost: < $25 monthly
Side effects: muscle twitching (fasciculations)

Dec 19, 2011 (Started Jun 20, 2011)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Advice & Tips: I has now been about 6 weeks since my last infusion. While my limbs seem to be stable my swallowing is declining. I choke almost every time I drink water now and I am starting to get into the habit of drinking milk with meals instead. Salivation is at this point worse than it was pre NP001. I have to work hard not to drool while I eat. My speech is about the same as pre NP001 or a little worse, but it does fluctuate from day to day. Overall I would say that I am declining, but again very slowly so far.
Cost: < $25 monthly
Side effects: muscle twitching (fasciculations)

Nov 28, 2011 (Started Jun 20, 2011)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    Mild (for Overall) (fatigue, muscle twitching (fasciculations))
  • Adherence
    Always
  • Burden
    A little hard to take
Advice & Tips: Today was my first post infusion followup which was a week early due to physician scheduling. It has been 3 weeks since my last infusion and usually by now I am feeling pretty bad and really 'jonesing' for my next infusion. This time however I don't feel as bad as previously. Overall the effect of NP001 has been pretty incredible. I feel that while I am not as good as after my first infusion I am in most ways better than just before the first infusion. The good: I still do not have weakness in my left arm and leg in fact my left grip strength is greater, I do not often have to repeat myself, I am no longer biting my lips and I do not feel fatigued by the end of the day. The bad: my saliva/drooling is slightly worse than it was before I stared the study. I am now wiping the corners on my mouth many times a day. Before the study I would only need to do it a couple times a day. The same: After the first infusion I could reach my tongue to the lower right and clear food from between my gums there, which I could not do before the infusion. I am now not able to do that bringing me to about where I was before the study.
Cost: < $25 monthly
Side effects: muscle twitching (fasciculations)

Nov 10, 2011 (Started Jun 20, 2011)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    Mild (for Overall) (fatigue, muscle twitching (fasciculations))
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 100 Low dose NP001 (1mg/kg) Daily
Cost: < $25 monthly
Side effects: muscle twitching (fasciculations)

Nov 9, 2011 (Started Jun 20, 2011)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    Mild (for Overall) (fatigue, muscle twitching (fasciculations))
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 100 Low dose NP001 (1mg/kg) Daily
Advice & Tips: I just received my very last infusion of NP001. I think overall if I have declined during this study period it has been at a small fraction of the rate before starting the study. The only thing I can say that is worse is that I am more frequently wiping my lips. I think my lip muscles have atrophied but my tongue has not, neither have my left arm or leg. My left arm was getting weaker just before I started the study but it has held strong since. Along with the decrease in strength on my lips has been a very slight decline in my speech. I have been recording my speech weekly since August and it is very difficult to detect a change so the difference is very small. I believe overall NP001 has drastically slowed my progression if it hasn't stopped it. Overall, I am better than I was when I started the study.
Cost: < $25 monthly
Side effects: muscle twitching (fasciculations)

Oct 14, 2011 (Started Jun 20, 2011)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    Mild (for Overall) (muscle twitching (fasciculations))
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: Monthly
Advice & Tips: Today is Friday October 14th. I finished my fifth cycle of infusions which I received Monday, Tuesday and Wednesday September 12th, 13th and 14th. Not much has changed. I definitely see at pattern where I start to feel sluggish around 3 weeks after my infusions and the infusions perk me up again. Overall my 'vitals' have been pretty much constant since starting the study, FRS, weight, FVC dropped a little but that fluctuates a lot. My grip strength has remained constant since starting the study, although that too can fluctuate from day to day. I am having a difficult time evaluating my speech. In some ways it is better than before I started the study but in some ways it is worse. I have a much easier time talking for long periods of time and I can articulate better, however, it is more evident that my speech is affected. Before I could muster the strength to speak maybe one perfect sentence but it would take a lot out of me. Now I don't think I can pronounce all words perfectly no matter how hard I try. But I can blab on and on but my speech defects are obvious. There is no doubt people understand me better than they did before the study. An example is when I am at a store and I give my phone number, I no longer have to repeat it. The one way I think I may have declined is in drooling. I seem to have to wipe my lips more often than before and I noticed night time drooling for the first time about one month after starting the study. But the difference is very very small compared to what it was like about 9 months ago. I think perhaps my tongue is stronger but my lips are a little weaker. It is difficult to decide whether I am improving or declining, which in itself is a good thing. Before starting the study I would notice differences in my state every month and they were obvious to me. Right now I am struggling to decide whether there are changes in my state from 4 months ago.
Cost: < $25 monthly
Side effects: muscle twitching (fasciculations)

Sep 17, 2011 (Started Jun 20, 2011)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    Mild (for Overall) (muscle twitching (fasciculations))
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: Monthly
Advice & Tips: Today is Saturday September 17th. I finished my fourth cycle of infusions which I received Monday, Tuesday and Wednesday September 12th, 13th and 14th. I am seeing a pattern with the infusions. I seem to improve up to about 5-7 days after the infusions feeling my best the weekend following my infusions. After that I gradually slide back to a point somewhere in between where I was before my infusions started. After about 3 weeks from my first infusion I am feeling sluggish and my speech becomes labored again. I don't seem to lose the articulation I have gained but I do experience fatigue in my speech muscles again when I speak. I also begin to experience difficulty swallowing again around that 3 week period. It is a gradual transition, but it seems at that 3 week point is where I start to wonder if the NP001 effect is temporary. At that point I can't get my infusion soon enough. Then after a few days after my last infusion I am feeling invigorated again. While my state does rise and fall with the infusions, overall on average my state is constant. That is, I feel my ALS progression has stopped. (edit 9/17/2011: I did experienced increased fascinations starting during infusion and lasting approximately 2 days)
Cost: < $25 monthly
Side effects: muscle twitching (fasciculations)

Sep 8, 2011 (Started Jun 20, 2011)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Monthly
Advice & Tips: Mid infusion update: I seem to notice a definite decline around week 3 after the infusion. That good old ALS fatigue seems to come back. This time around right at about 3 weeks I started experiencing cramping in my tongue which I have never had before. While my speech is still ok, if my tongue cramps up I have to pause until it stops. I am very much looking forward to my next infusion.
Cost: < $25 monthly
Side effects: muscle twitching (fasciculations)

Aug 19, 2011 (Started Jun 20, 2011)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    None (for Overall)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: Monthly
Advice & Tips: A quick update. It has now been 2 days since I finished the last infusion cycle. My speech has improved considerably. I don't think my speech has been this good in about 4 months. If the past two months are any indication I expect it to get a little worse up to the next infusion and then take another jump in improvement. Each infusion seems to be an overall gain over the last infusion.
Cost: < $25 monthly
Side effects: muscle twitching (fasciculations)

Aug 17, 2011 (Started Jun 20, 2011)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    Mild (for Overall) (muscle twitching (fasciculations))
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 100 Low dose NP001 (1mg/kg) Daily
Advice & Tips: I just finished my third infusion. Still no side effects. Again I have had a significant increase in the grip strength of both hands. My original grip strength scores were Left Hand: 67.5 lbs, Right Hand: 93 lbs. My values as of today are Left Hand: 110 lbs, Right Hand: 125 lbs. Before the study I was well below the average for a 44 year old male. For my left hand I was in the bottom 1% ! I am now just at the average mark for my left hand and above average for my right hand. This represents a 63% increase in the strength of my left hand and a 34% increase in the strength of my right hand! My speech has improved very slowly and fluctuates in quality form day to day. I myself have not noticed much of an improvement since about 2 weeks after the first infusion. However, I have been told by many people, especially those I don't interact with often that my speech is getting better and has improved over the last month. Today it seems especially good. There is one thing I know for sure. My progression has stopped since starting this trial. Furthermore the grip strength tests show definitively that I have improved at least in some areas. My FRS graph is deceiving. It make it look like I am a naturally slow progressor, but I was just about to start losing FRS points. I was loosing dexterity and strength in my left hand and left leg and given another couple of months my FRS score would have dropped 2-4 points. I have little doubt that NP001 prevented that. (edit 9/17/2011: I did experienced increased fascinations starting during infusion and lasting approximately 2 days)
Cost: < $25 monthly
Side effects: muscle twitching (fasciculations)

Jul 19, 2011 (Started Jun 20, 2011)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    Mild (for Overall) (muscle twitching (fasciculations))
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 100 Low dose NP001 (1mg/kg) Daily
Advice & Tips: Testing revealed dramatic increase in grip strength in left had of 26%, less dramatic but significant increase in grip strength in right hand of 7%. (edit 9/17/2011: I did experienced increased fascinations starting during infusion and lasting approximately 2 days)
Cost: < $25 monthly
Side effects: muscle twitching (fasciculations)

Jun 22, 2011 (Started Jun 20, 2011)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    Mild (for Overall) (muscle twitching (fasciculations))
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 100 Low dose NP001 (1mg/kg) Daily
Advice & Tips: Vastly improved ability to swallow liquids and foods. No longer choking on foods or liquids. Increased tongue range of motion. Improved lip strength, improved pucker foce, improved ability to contain liquids in mouth. Reduced drooling. No longer biting lip during eating and talking. Slight improvement in speech. Regained consonant "t". Elimination of fatigue during speaking, able to speak for extended periods. Prior could only speak a few sentences before fatigue set in. Elimination of 'heavy/numb' sensation in left arm. No observable side effects. (edit 9/17/2011: I did experienced increased fascinations starting during infusion and lasting approximately 2 days) Overall vastly improved quality of life.
Side effects: muscle twitching (fasciculations)
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