Hi all.. My Trial continues.. I had my appointment with a Professor Consultant ALS Specialist on the 11th Floor again but in a nice private room with
a view over a green and clean Sheffield here in England, Thanks Angel Nurse again ! .. ALS now confirmed by this dapper 40 year old with flickering
eyelids and oozing confidence and knowing a lot. No estimation of my demise as I know it can be under a year to most probable up to three years and
very rare occasionaly ten years.
Most my test came back fine bloods, Urine, MRI, Xray, Lumbar P I think ? It was mainly the EMG torture that pinpointed my Diagnosis along with my
This dapper Fellow let me know that most pop of during a comfortable sleep "" How are you sleeping Mr M "
I can contact his secretary whenever.
Considering my original appointment was for 10th of Distant September I with the help of a few Angels have bucked the creaky system here in the UK.
Diagnosed in just over two months when the average is I think 8 Months.
Obviously with myself it was important to be quicker as I feel I have a V steep down slope, this may well be because my Immune system is working so
well after some years of Ultra healthy practices ?
I will start my Liquid regimen on Thursday 21/6. I have Today e-mailed a few contacts including a specialist ALS senior Nurse, A Leader Of the MND
Charity here in the UK ( Angel )who Has helped in my getting Diagnosed quickly and eventually to Mr McDermott's secretary for Himself from who I have
asked for feedback, Correction or Criticism . I will copy the draft of my E-Mail below and will welcome any Input however sent. O I part explained (
Slurred ) my Liquid Regimen, Mr Mac in his wisdom his reply was you should maybe increase your calorific intake by 20% as your twitchings will be
using more energy than not twitching. Anyways still positive some onward I wobble enjoying the World Cup ( Soccer )
Very Well hosted by Russia ( You can be nice )
Make of this what you will.. And good health to ye all or some peace at least.
I had my appointment yesterday with Mr McDermott a nice guy, him of the flickering eyelids. He confirmed a diagnosis of ALS like I expected.. Good
in the end I had a diagnosis within near two months since first notification to my Doctor. The average is Eight months which is terrible really with
such a relentless condition. All my other tests came back as fine Bloods, Urine, MRI, Xray, Lumbar puncture I think Fine. That EMG torture test was
the main pinpoint.. I am fine, happy to have a diagnosis as vague as ALS seems to be, I think they will sub categorize things in the future somewhat ?
I have E-Mailed Theresa Walsh who Sam Coggeran tried to arrange a visit yesterday, I presume that you know of her ? I will also E-mail Mr McDermott's
Secretary if Theresa does not forward on my plan Ha.. I will copy bellow what I have sent Feel free to comment or criticize most welcome..
"Hi Theresa. Thought I would drop you an E-Mail to make contact and update you on my thoughts.
Yesterday I had an appointment with Mr McDermott in ward L1. Sam Coggeran ( An Angel ) had tried to get me to see you but this was not possible . I
will briefly go through my progression to yesterday's diagnosis.
I first notices muscle twitches in my right lower leg in June of 2017 I thought this was just due to exercize as I was a regular swimmer, Biker and
I continued my life while the twitches continued.. By November 2017 I noticed my right foot had slowed some this started the tick tick down with no
sign of any improvement on any day since.
The twitching spread to most of my muscles and I have gradually weakened. My voice started slurring in January with some coughing up of flem
difficulty and inability to hold a sneeze.
Now I can only shuffle some as my right leg is very heavy for my weakened muscles, my left leg seems to be following and is now in the place my right
one was in April. All my muscles are weakened.
Yesterday Mr McDermott mentioned a trial MIROCALS and Nurse Mbombe Kazoka brought to me the Patient Information Sheet and explained this trial some.
After reading through the information I have decided against it.
I feel my time is short and nothing short of some miracle will arrest this progress down. Also I have read about a mouse study with Upping Treggs and
it had similar results to the Riluzole usage..
I have slurred a message to Mbombe as she only gave a phone number, saying I have decided against that trial which I feel is far to long for me in my
condition also with not much chance of any improvement.
Also I agreed to taking Riluzole and have a box of 56. On reflection I will not start these tablets, I am medication free, I have no Pain, I would not
like any upsetting side effects or with my Immune system suppressed catching a bad cold or Virus would be horrid. I have a mild cold at present and
the inability to clear ones throat or sneeze properly is very uncomfortable.
I will share my Plan with you and will welcome any feedback or corrections.
I have in my mind my birthday on August 4th. Now my downward progression has seemed to me a tick tock steady pace, I in my opinion consider myself
at 20% since I started this Journey at near 100% on the 1st of November 2017.
I initially gained in weight until quite recently when my appetite has reduced somewhat I have at least I would think 20lbs of excess weight . I
spoke or slurred to Mr Mcdermott how I intended to go on a liquid regime and he answered with the fact that I should maybe increase my calorific
input by 20% as my muscles were twitching away.
Now I could not go into detail with my slurring. I intend to liquid/ Fast some to see how this goes ? I will drink good water, I will drink Nettle tea
with maybe some Lemon and honey the same with Green Tea, I will also have a small bio- Yogurt drink and a twice weekly berry smoothie maybe ? I will
do this for 10 days and evaluate ? then for a 34 further days if happy until my Birthday on 4/8 when I will evaluate again if able ?
My Reasoning ( Corrections or criticism are fine )
After looking at to much ha published research.
Maybe Accretion of Missfolded proteins within cells are damaging those cells enough for out Immune system to jump in and kill of the cell. To me there
seems to be a fault with the Autophagy process. These missfolds are common in us all on occasion ? the Autophagy process dissolves these missfolds
and no deadly accretion occurs.
This Autophagy process is boosted somewhat by fasting or Intermittent Fasting ? Although I believe the Immune System is also boosted ?
I have read somewhere that a mouse study found that increasing Autophagy at early onset ALS delayed that onset somewhat, on later stage ALS it is
seemed that with mice increased Autophagy hastened demise ? Now I have not found any human study with boosting Autophagy ? I presume the boosted
Immune system overrides any Boosted autophagy in mice.
I hope this is somehow clear above ? I do need to do something to try to help myself while still just able. I intend to record my weight twice daily
also record my input and continue with my symptom record. I may add V
edit on 19 6 2018 by skywatcher44 because: Add