Slow or fast progression

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Sammy88

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The mnd professor at The National hospital queen's Square london, said my als is a slow progressing als, but how can it be slow. In the last year it has spread from my right leg to my left leg then my left arm and hand.

That seems fairly fast to me. I understand everyone journeys is different with als. I thought a slow progression would be at least one year in one limb before progressing into another 🤔.
 

Nikki J

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It is all relative. We have had a number of members who were dead in under a year and others in a power chair with feeding tube and eye gaze. We had one person who was FALS every member of their family died in 2-3 months of first minuscule symptom. the professor can compare in their experience of where you fall in all the patients they have seen. It can be hurtful to hear slow, doing well, looking good when you are experiencing what seem to be profound losses
 

Tomswife

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Our official diagnosis was in a clinic meeting with Hiroshi Mitsumoto at the Lou Gehrig ALS Clinic at New York Presbyterian Columbia. Dr. Mitsumoto told us - do not compare yourself to anyone else. He advised, don't pay attention to other people's progress with ALS. Everyone is different. There may be some general typical progressions but everyone is different. Dr. Mitsumoto is well regarded in the ALS world for his research and work to understand the disease. Many medical white papers written even 20 years ago, Dr. Mitsumoto coauthored.
It is difficult for PALS to be on this journey and not understand the next stage. There is so much they are learning about ALS and much yet to be discovered.
I hope this is helpful.
 

affected

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It really is relative and it can speed up and slow down.
The gorgeous person who worked as our ALS support manager from MND NSW lost her sister only 2 months after diagnosis. Such a shock after her working for years supporting people.
Sometimes it is just slow progressing to affecting the breathing which can mean you can live and enjoy many things for years and years.

I hope you can find the most in every day that you do have, that's the best we can have in life, ALS or not. Not the answer we want, but it does make a difference.
 

Mana

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This is what torments me: the unpredictable future. I am grateful for slow progression so far, that we have such a loving supportive family, were able to move to a more accessible home, got an early diagnosis, have access to excellent care at Duke ALS clinic, had a long healthy life together before this catastrophe….but feel guilty that I still feel like a piano is falling on us in slow motion. I liked the idea I read here that radical acceptance is an action, not a destination. I mostly lurk, but I get the most support and understanding here, as well as an appreciation of the kindness and open hearts of all of y’all.
I wish for you, the same comfort. This forum is a safe and gentle place
 

Sammy88

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Thank you everyone for your kind replies .

Just when you finally get your head around the diagnosis , the next thorn in your side is the progression.

I got some good news today, I've been invited to take part in the AMX0035 phase 3 trail .
 

Nikki J

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Oh that is wonderful! And as well as being in a trial of a drug with a very hopeful phase 2 there is benefit to being in any trial or study and being seen by the research staff
 

Sammy88

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Thank you Nikki and Mary

I am rather excited about this trial. On paper I match the criteria just need to pass the physical tests. My family and I recently gave lots of our blood for a Biomarkers study in Neurodegeneration. At the time I said sign me up for any studies.

Roll on next week cant wait to get started 😁
 

MJT

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Sammy88, everyone is rooting for you to pass those physicals! Please keep us posted.
 

Tomswife

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Thank you Sammy88 for working on our behalf!
 

wtlpc22

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I don't understand your response. We know each person progression is different. No one knows why.
 

Clearwater AL

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wtlpc, which response or responses are you referring to? There's been 11 posts.
It would help further replies that may follow.
 

Sammy88

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I had my appointment, passed all the tests for the criteria of the AMX0035 trial except the blood test, it wasn't done in advance for the liver test. Seems like a wasted journey but at least i know i will be excepted back to finally go onto the trial straight after Xmas. Hospital rang today to say my liver functions are good.

Also have received a letter confirming I'm having a mri scan of the brain soon, not sure why. Any ideas why ??

Xmas wishes to everyone on the forum . Keep up the fight 💪 fingers crossed to 2023 being the year of great advances in finding a cure for ALS.
 

Nikki J

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Congratulations on acceptiance into trial.

mri of the brain is a common thing during the diagnostic workup to rule out other causes so it seems a bit strange to get one at this point unless you have some other issue they are exploring. You can’t diagnose ALS by mri though there are very rarely changes that are suggestive but would need clinical correlation. I would ring your current team and ask if you really need it. I am wondering if it is a leftover order from your pre diagnosis time
 
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