Any benefit to early diagnoses

[Lark2]

Just wondering what individual opinions everyone has to being diagnosed early or Later.
Any Benefits to an early Diagnoses?

 

[BethU]

Yes, with an early diagnosed you can start Rilutek that much earlier, and thus probably get more benefit from it.

 

[BrianD]

I think there is benefit from a practical "get ready for it" standpoint too. It gives you more time to plan for home modifications, assistive equipment, etc.

Now I can say it's absolutely no fun in considering such things, but from what everyone says, staying ahead of it makes the journey "easier".
(Easy is not really the term I'm looking for.. but can't think any appropriate word at the moment).

Brian

 

[hopingforcure]

Yes, preparedness. I look at the knowledge as a good thing. I also think non-diagnosed. can be just a stressful for the patient and family, and at least everyone can get on the same page, and get proper info and gear in place.

 

[Twinsmom]

I agree with HRC or Hoping...we've been in the "we think it's ALS" diagnosis being given verbally but not in writing for 6 months now...the limbo state is incredible stressful. Trying to get our hearts and brain around what we're pretty sure the diagnosis is, but not wanting (or able) to let go of the hope they find something else...

A clear diagnosis also let's you begin the "business" of lining up benefits - at least in our case it would since he's in the Air Force..would allow you to get things in order while not in a physical crisis. For me, that seems to be the only thing I can have any control over...

 

[Pidge]

My son was diagnosed on his first neuro visit before he was even tested for anything. I already had figured out it was very likly ALS & when I told his neuro he had no Ins. he diagnosed him that day & told us to get the paper work going for SSI etc. I have been very greatfull to that DR. that helped us get things in order very quickly whithin a few months my son had SSI coming we have Medicaid thru, & MDA has been a great support. I can't imagine what it would be like to be sitting & waiting all this time for a definite Dx infact all of his testing was done free because of the early Dx by his Neuro. Pidge

 

[irismarie]

As everyone says, you get the paperwork started earlier so you will get the benefits from them earlier..........;;

 

[Marjorie R. Wilcox]

Pidge, please if you will, tell me what tests gave the diagnosed? Was it the EMG and CPK blood tests? Did your son have a muscle biopsy and a spinal tap too? Thank you

An early diagnosed could be frustrating and more stressful. I say that because Rick was diagnosed within a couple months of some tests, so conclusively that the biopsy and spinal tap was canceled. Then after living w the diagnosed nearly two years, it was questioned as soon as Rick asked for disability benefits from the VA.

Then he went through humiliating questioning if he had STD, exposure to asbestos, or was a closet alcoholic! We were so ticked! He spent 2 tours in Vietnam with Agent Orange.

Now after 2 1/2 years and additional symptoms, the VA is repeating the beginning tests again and we are told it likely will be ALS. No duh!

Stressful doesn't cover it. But Rick doesn't want Rilutek after hearing of those on this forum who say don't bother.

 

[Pidge]

Well my son was Dx like I said on his first visit & evaluation w/ no testing, from there he had MRI,EMG & Blood test then we were referred to the Cleve. clinic where he had another EMG & more Blood test the neurologist at the Cleve. Clinic agreed w/ 1st Dr.s Dx. He has had no spinal tap or biopsy & hope he doesnt have to. My son has said no to Rilute also not enough benefits & we agree you maybe adding only a couple additional months of life but not necesarily quality to your life. But that is an individual decision one has to make. My son has alot of atrophy in his legs & he has noticable twitching on his lower & upper body. I really do not know all the technical terms but I would say the EMG is what determend his Dx plus a couple of Drs who are very familiar w/ ALS. I know one thing coming from a military Family when you deal W/ the VA it's a whole different game they have to have their own proof of everything & there is a high acurance of ALS in the military right now, that they have tried to down play. ALS THE MILITARY "unexpected consequences of military service" look that up if you are interested. I hope I have been of some help. Pidge

 

[Zaphoon]

Yes, you want a diagnosed as soon as possible, especially if you wind up having something treatable or even curable.