My first post, just diagnosed the other day

[Cab6711]

I have been on the sidelines reading thru different threads and searching for answers for some time. I received my diagnosis the other day. Slowly Progressive ALS, I understand I am very fortunate that my disease progressing is very slow, but the reality is still hard to comprehend, especially for my family. Because of my slow progression (I started showing signs in 2005) it has been a lot of waiting and ruling out of mimics, it also took the right ALS Specialist at an ALS/MDA Clinic to finally be able to complete my diagnosis which was MND for several years with hopes of not progressing to ALS! But here I am! I am sure I will be asking questions as I continue this journey and it is nice to know there are others who truly understands!

 

[Nikki J]

Welcome. Sorry you have to join us. May your progression continue to be slow! I don't think I have ever heard of such a long diagnostic delay before, wow!

Please do ask any questions and we look forward to getting to know you.

 

[lgelb]

Welcome, Cab. Chime in any time. Glad you are fortunate to have slow progression.

Best,
Laurie

 

[swalker]

Very sorry to have to welcome you here, but encouraged by your report of very slow progression.

Since you have been watching from the sidelines, you already know what a wonderful resource this forum is.

Steve

 

[Firefighter58]

Sorry to meet you here Cab, but we have no choice. May all our friendships be very long.
Al

 

[KimT]

Hi Cab. Hoping your progression continues to be slow.

 

[Cab6711]

Welcome. Sorry you have to join us. May your progression continue to be slow! I don't think I have ever heard of such a long diagnostic delay before, wow!

Please do ask any questions and we look forward to getting to know you.

Thank you, they say my atypical presentation and slow progression made it very difficult. I have been seeing neuromuscular neurologists at both The Cleveland Clinic, Hopkins and Syracuse Upstate!

 

[Cab6711]

Thank you!!

 

[AKNate]

Hi Cab,

I'm glad to hear your progression is slow! May i ask how far has it progressed in the last 10 years?

My husband was told he has a mild form of ALS. He has a SOD1 mutation and patients i have found in medical documents with the same mutation have had ALS for 10 years plus. He is still able to walk, stairs are difficult and he uses a walking stick. The other day i noticed his thumb was acting up a little too. It's been 4 years since onset and he's 33 yrs old. He hasn't start taking Riluzole yet though.

 

[Vincent]

Welcome to the club no one should have to join. You are among friends. I'm a slow progresser too. 5 years since symptoms started and I can still walk and just finished carving a horse's head. It may not seem like it now but life can still be fun.
Vincent

 

[Hank]

That is awesome slow. use it wisely to advance the search for effective treatment or cure

 

[pittsburghgal]

Hi, Cab,

My husband, Frank, also had slow progression with symptoms beginning in 2007. This slow progression resulted in a delayed diagnosis of ALS until 2011.

You will find good information and wonderful support here. I hope for continued slow progression for you.

Sharon

 

[Cab6711]

Hi Cab,

I'm glad to hear your progression is slow! May i ask how far has it progressed in the last 10 years?

My husband was told he has a mild form of ALS. He has a SOD1 mutation and patients i have found in medical documents with the same mutation have had ALS for 10 years plus. He is still able to walk, stairs are difficult and he uses a walking stick. The other day i noticed his thumb was acting up a little too. It's been 4 years since onset and he's 33 yrs old. He hasn't start taking Riluzole yet though.

I started Riluzole pretty much right away about 10 years ago, I am still walking short distances with a cane for stability, I use a wheelchair for longer distances, I still drive when not feeling to fatigued, I have muscle weakness throughout but my left side is the worst with atrophy from my feet up through my face, my progression has picked up this past 10 months, my neurologist says at times it can pick up and then slow down again, I don't know if others have experienced this as well? I have to rest a lot and normally sleep several hours every afternoon. My lungs are still over 100%. I hope he continues to progress slowly!

 

[Firefighter58]

good for you Cab.
Al

 

[Nikki J]

Do you have a family history? I am interested that your doctor was sure enough to prescribe riluzole then yet it took so long for your to get diagnosed. It was obviously a good call- and I have been told the earlier you get it the better it works. Do you mind sharing your onset site? I was recently told that a small subset of people with my genetic defect c9 seem to have very slow progression and all of that group are leg onset