billsmith

Merry Christmas Bill! thinking and praying for you on this Eve of Christmas! love and (hugs))

Hi Bill, havent seen you around much so I am checking in on you. Are you alright, friend? Blessings!

Hi Bill...just looked at my blogg and saw your comment. Thank you! Holding you and everyone one on this Forum Family in prayer! It's a tough Journey, but we end up where we started: Home with God.
Blessings!

Oh BILLLLLLLL! WHERE ARE YOUUUUUUUUUUUUU! You okay Toots?

So, where are you and how are you? Haven't heard from you in too long. We worry when we don't hear from folks. You okay Bill?

Your "kidding, sort of, " is so true. We never stop growing or learning. I'm happy for that and see everything with facination. Even things like this. I plan to learn as much as I can about how to do it well, with good spirit and humor. I just hope my dear husband can too. He's not used to living in the moment and I do worry about him. So far it's not too intrusive in our lives. Just a little.

I don't feel sick so don't think of myself as being unhealthy at this point. Time will tell as to how this is all going to play. Life sure is interesting!

Ms. Pie
I feel very grateful. I am grateful for wht has been given me and grateful for what has been taken away. I am focused on doing what i can and leaving the rest to what ever you might want to call it, God, Love, Nature, ether, ???. I know that the thing I can change is my way of looking at things. Other than that I am fairly limited. I did start to think that if the Rizuletek, or what ever it is, slows progression, it would be better to get a diagnosis sooner rather than later so I could take it sooner, if it was going to be necessary later.

Oh well ALS consumed my mind for the last month or two and I am feeling like I have taken all the action necessary for now. I am back to trying to figure out what Iwant to do when I grow up. Jus kidding, sort of. Actually I am refocusing on being of use to my fellow houmans. Really what else is there.

Thank you for asking.
How are you doing, other than physically?

I wish my doctors would say it's not ALS but, no such luck. If a person isn't diagnosed until after death it's most likely because they didn't go to the doctor or had a doctor that didn't diagnose it properly. ALS isn't a real popular illness so a lot of people, even medical professionals, don't know much about it. That's what I think anyway. How are you feeling all things considered? I feel great! My parts just don't work like they used to and it's getting worse. Hope you're doing well my friend!

Looking into the diagnostic criteria, I am still puzzled if my doctor is pulling punches. After fairly strongly indicating all tests showed strong likelihood of ALS he turned around and said I do not have it based solely on the muscle biopsy showing no signs of atrophy or grouping.
He did say come back in 6 months for more tests. I am looking for other possible causes with my primary care doc. He gave me referal to UC Irvine for 2nd opinion. I thought if they say I do have it I could get on meds that slow it down. I read where some ALS is only diagnosed after death and autopsy. Seems like that is not a good way to go. Maybe that is why drug trials allow likely or probable diagnosed participants. Any thoughts?

You're right when you say this is only an illusion. I used to go to a theologian/philisopher's weekly lectures years ago and he said it's good to become disillusioned. It's good to see what really is rather than what we try to make things in to. Rough sometimes but good. The important things to you are the important things to me too. At least my version of it anyway. Yes, that's all that really matters.
Have a great day Bill! It's almost the weekend and I haven't had a real one for months!!

It has been a blessed experience, crazy as that sounds to have gone through this experience - even now not knowing what to think. All I can do is be grateful for this moment. it is only an illusion we now anything about the nesxt moment or next day. All I can try to cntrol is my attitude. It is a great experience tolook at the possibilty of not beng here tomorrow. It helps me focus on the important things in life - Love, and sharing Love with all Gods Kids what else really matters?

As for me, I noticed weakness in my right fingers a couple years ago. Thought it was odd but it didn't alarm me. Then last summer I noticed weakness in my lower legs, particularly in my right leg. I started to become alarmed. Then testing started. First EMG Neuro said carpel tunnel in early fall. A neurosurgeon friend of mine looked at my hand and noticed some atrophy and said it's not carpel tunnel. I went to an Ortho surgeon who sent me for an MRI of my hand. The MRI showed nerve damage in my right hand. A second EMG is when I got the first ALS diagnosis. I then got a second opinion and a more thorough EMG of my left hand, arm, leg, spine etc and she also diagnosed ALS. I now have drop foot of my right foot, can't use my right hand for much. Hubby has to do a lot of buttoning and opening for me. I use a cane quite often now for balance. I've noticed my speech is starting to be affected but people I'm talking to say they don't notice. That's it for me.

Great news Bill! I do wonder what's going on with you though. Will you continue to investigate? I think I would but that's just me. Congratulations!!!! ; )

Sorry for getting such positive news and questioning it. must appear crazy. I have focused on accepting any possibilities and then got congratulations. I am just a litle sceptical after hearing of all the variations of determination of positive diagnosis. My human-ness exposed. It is obvious how badly I want to know the future - even if it is seemngly negative. The answer is that I don't get to know the plan ahead of time. And all I have is today. Thank you everyone who has had the compassin for others to share your true thoughts. I expect to stay in contact with this forum because as strange as it seems I have had much bliss and appreciatoin for life after getting a potential diagnosis of ALS. It shows me how much we take for granted until the thought of loosing it arrives. I think I need to forget the whole thing for toady and live life to its fullest like it is my last.

Thank you so much for your patience and care.
grateful for whatever God puts into my life.

Drop foot started 4-6 months ago
Orthpedic specialist 6 weeks ago
xrays and mri of back and neck normal
refered to neurologist 3 weeks ago


Neurologist
EMG/NCV
Polyphasic fasciculations in legs arms shoulder back and tongue
right posterior tibial h-reflex delayed at 33.68 ms
clinical comments on report "The findings of diffuse fasciculation in multiple muscle groups sampled strongly suggest the presense of anterior horn cell desease and the clincal possiblility of ALA Theer is no evidence of lower extremity peripheral neuropathy'
also no evidence of lumbar raduculopathy.
Blood tests and spinal fluid no abnormalities.
Today results of muscle biopsy: no sign of atrophy
He came in the room and said congratulations you do not have ALS.
I would be more convinced if they had biopsied muscles were there was some weakness.
Please give your input from your own diagnostic adventures with ALS to give me help = reality check. Something doesn't seem right.