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Re: Diagnosed with ALS

PostPosted: April 17th, 2015, 9:27 am
by will97
Dear Vince,

I dont think that we really ever wrote or spoke to each other directly here, but I did read many of your previous posts. Like everyone else on this forum, my heart goes out to you and your family and you will be in my prayers. I truely wish that there would be some sort of cure for this awful disease and I do believe that one day (soon) there will be hope as I still struggle with the fact that in 2015 there are some serious diseases as this one thats are not completly understood by specialists.

You are right that many of us will say things like ''I have these symptoms as well'' but as you stated everyone is different and we need to push through ... I have been going through a rough patch of late (as seen in my last post) and I am still struggling and have many of the symptoms that you mentionned (excessive phlegm, constant focal twitching in the fore arm, cramps and others) but that doesnt mean that we are all the same and we all need to remember that ... mysellf included. I thank Gary, and everyone else for trying to help me (us) here when we need it most.

Thanks for sharing your story Vince and I really hope that you stay strong and keep well.
Will

Re: Diagnosed with ALS

PostPosted: April 17th, 2015, 10:12 am
by crotwich
Dear Vince,

I am so sorry to hear the bad news, I read your post in tears... You are such a brave and open-minded person; a true inspiration to us all.
I wish all best to you and your family and I hope you will have a very slow progression.

Regards,
Cro

Re: Diagnosed with ALS

PostPosted: April 17th, 2015, 10:20 am
by leaflea
Dear Vince,

Please accept my deepest condolences. I did not see this coming, as I have had the same symptoms above as you and Will. Thanks for coming back and clarifying the timeline, in one old post it says you started twitching in April of 2013, not 2014. Do you still get those cramps? I had them just like that but they have pretty much gone away for a few months now after getting worse for a few months but always there from the beginning. I was 46 when this started and 48 now. BFS surely can be a mimic and I'm still hoping they take it back.

I wish you all the best in this journey, you will be in my prayers for sure. Peace.

Re: Diagnosed with ALS

PostPosted: April 17th, 2015, 10:40 am
by physerv24
Thank you and yes I still have the cramping but it has gotten much worse. Each month that passed it became more widespread and frequent. I am starting Riluzole today and my hope is that it may delay progression. If I posted April of 2013 that was a typo. Everything started in April of 2014. I also wanted to mention that the abnormalities found on my second EMG from Cleveland Clinic that were attributed to possible cervical problems did not meet the El Escorial Criteria for MND and I believe that's why Cleveland Clinic indicated that there was "insufficient" evidence for a diagnosis of widespread damage as found in MND. If they had offered me a follow-up appointment to look for progression they would have found it by January, I'm sure. That would have been 9 months from beginning symptoms. But keep in mind that I had that EMG in September of 2014 and they found abnormalities so that was only 5 months after first symptoms.

Vince

Re: Diagnosed with ALS

PostPosted: April 17th, 2015, 10:46 am
by leaflea
Thank you Vince, for continuing to clarify. So helpful. Please let us know if there is any way we as a group could help you.

Re: Diagnosed with ALS

PostPosted: April 17th, 2015, 11:03 am
by physerv24
You have all helped me so much over the last year. The first 3 or 4 months were the absolute worse for me and I was quickly sliding into a dark place. You all pulled me out of that and gave me encouragement and strength as well as invaluable information. I really do feel blessed to have had the time to research and prepare myself for this and I have met some amazing people. As I said, when things kept progressing I knew in my heart that it was unlikely I would escape this but then I began thinking about others that were so much less fortunate than I. I imagined the countless number of children fighting for their lives with terminal cancer; those who lost their loved one suddenly from a heart attach or stroke or accident. None of us know the number of our days and I am being 100% honest with you when I tell you I am at peace with this and consider myself blessed to know that my time is limited so that I can love my family and friends with all that is within me for as long as I can. You truly gain a different perspective on life. I was not shaken, nervous or emotional when the doc gave me the news, however my heart broke into when I looked over at my beautiful wife and saw the tears streaming down her face. I have 2 brothers and 5 sisters and I am the baby. They have absolutely flooded me with overwhelming support and love and I can't help but feel how lucky I am. You are all strangers yet you take the time to send me positive well wishes and prayers. How wonderful is that? As humans we have amazing spirits and energy that we share with one another through contact, whether physical or simply by thought process. I don't think there is anything more powerful than that. I feel a little guilty sometimes with all this support but know that I'm sending it right back out to you all.

Re: Diagnosed with ALS

PostPosted: April 17th, 2015, 11:04 am
by mwagner
Vince,

You strike me as not only brave, but also so empathetic and kindhearted, because even though the vast majority of us are dealing with a benign condition: you are taking the time to reassure the BFSers that they are going to be okay. All while getting a very dire diagnosis. That amazes me. I just hope that you don't lose hope, because from what I understand, many progressions are being made right now in the fight of this awful disease. I just signed a petition to fast track the trials and release of a drug (forgetting it's name) that is supposed to be remarkable in slowing and or stopping progression. I also emailed a number of people involved in this to get more movement on it. I hope you can push your doctors to try anything that is innovative at this point.

Anyway, I also wanted to let you know how sorry I am that you are dealing with the horrible disease, and I will pray for you, that things move quickly in the treatment of it.

Re: Diagnosed with ALS

PostPosted: April 17th, 2015, 11:11 am
by will97
mwagner wrote: I just signed a petition to fast track the trials and release of a drug (forgetting it's name) that is supposed to be remarkable in slowing and or stopping progression. I also emailed a number of people involved in this to get more movement on it. I hope you can push your doctors to try anything that is innovative at this point.


Can youmake this petition available to all of us? I would be in line to sign this petition and get things goingso we can help amazing people such as Vince win this nasty battle.

mwagner wrote:Vince,

You strike me as not only brave, but also so empathetic and kindhearted, because even though the vast majority of us are dealing with a benign condition: you are taking the time to reassure the BFSers that they are going to be okay. All while getting a very dire diagnosis. That amazes me.


Vince, I couldnt have said it better myself ... you a re a true inspiration for us!!! Keep well sir!!!

Re: Diagnosed with ALS

PostPosted: April 17th, 2015, 11:17 am
by mwagner
Of course! I am surprised this hasn't been posted before. I'm not on here frequently anymore, so I just figured someone must have shared it at some point.

Here it is:

https://www.change.org/p/fda-grant-acce ... responsive

Genervon's GM6 is the medication.

Re: Diagnosed with ALS

PostPosted: April 17th, 2015, 11:18 am
by nickston
The petition is for Genervon's GM604 (aka GM6), and while I don't have a petition link handy they are readily found online on change.org.

EDIT:
https://www.change.org/p/lisa-murkowski ... use-in-als

Re: Diagnosed with ALS

PostPosted: April 20th, 2015, 10:56 am
by Labrie
3.5 years for all the muscles twitching.
7 months with hotspot on forearm
1 month hotspot on my tongue
A few days ago I have clear excess phlegm in my throat and spit, I have the impression swallowing evil.
Now I read your story and panicked.
Sorry! I'm in panic.
my support for you, Vince

Re: Diagnosed with ALS

PostPosted: April 20th, 2015, 11:48 am
by physerv24
Labrie,

Do not panic! Your very first line of 3.5 years of twitching should put your mind at ease. There is absolutely no way, NO WAY, you have anything related to ALS with 3.5 years of twitching and no atrophy accompanied by CLINICAL WEAKNESS. I don't know if you have had the necessary tests or not but when you read my post, please read it in its entirety. Do not go through and pick out symptoms that are similar to yours. Read the post in its entirety. I posted my story at the request of other members to put your mind at ease and to educate you, not to put you into a panic. All of current posters on this board are following the same road. My journey unfortunately took me down a DIFFERENT PATH after about 6 months. You are fine and you will continue to be fine. You have annoying twitching and odd "feelings" but you are the same person you were 3.5 years ago!

Be well and enjoy every day God gives you.

Vince

Re: Diagnosed with ALS

PostPosted: April 20th, 2015, 12:30 pm
by Labrie
Thanks for your understanding, EMG at 4 months of start twitching. All Clean. Visit four neurologists, and all ok!
But I have now scared by excessive phlegm, and difficulty swallowing ... I have a ball of mucus in my throat !! and to read that you also had phlegm I felt identified

Re: Diagnosed with ALS

PostPosted: April 22nd, 2015, 12:03 pm
by German2
First of all, I will tell you that I really get goose bumps regarding your power and attitude..It is always a shock to have a member diagnosed with ALS. You have all my honour and respect!!
Stay strong! Thank you for still being around here.

@ Labrie: I had about 2 month this year with excess phlegm. There was no clear reason for that, but after my story I thought it is my road down. But actually it is gone....

Re: Diagnosed with ALS

PostPosted: April 22nd, 2015, 1:04 pm
by will97
@Labrie: I have been dealing with excess phlegm for the last 2 years as well ... and a lot of it ... I try to clear my throat a lot but I try not to focus on it too much anymore ... its tough though at times when your throat, chin, cheeks, toungue twitch as well ... Take care