Doctor thinks I have als?

[BrianD]

Actually, the "probable ALS" is specific terminology using the El Escorial World Federation of Neurology Criteria:

Definite ALS
is defined on clinical grounds alone by the presence of UMN as well as LMN signs in the bulbar region and at least two of the other spinal regions or the presence of UMN and LMN signs in three spinal regions. The important determinants of diagnosis of definite ALS in the absence of electrophysiological, neuroimaging and laboratory examinations are the presence of UMN and LMN signs together in multiple regions.

Probable ALS
is defined on clinical grounds alone by UMN and LMN signs in at least two regions. While the regions may be different, some UMN signs must be rostral (above) the LMN signs. Multiple different combinations of UMN and LMN signs may be present in patients with probable ALS.

Possible ALS
is defined on clinical grounds alone when the UMN and LMN signs are in only one region or UMN signs alone are present in 2 or more regions or LMN signs are rostral to UMN signs (the latter distribution of signs needs to be differentiated from multiple non-ALS processes). Monomelic ALS, progressive bulbar palsy without spinal UMN and/or LMN signs and progressive primary lateral sclerosis without spinal LMN signs and progressive primary lateral sclerosis without spinal LMN signs constitute special cases which may develop LMN or UMN signs to meet the criteria for probable ALS with time or be subsequently confirmed at autopsy by specific LMN and UMN neuropathologic findings.

I wish you the very best in sorting out the spinal issues from hopefully not ALS.

 

[adozi]

Yes, it's generic as of last month, and your VA insurance will pay, i believe. Regular liver function tests should be ordered by your ALS doctor, if you need to keep taking it. Which again, i sincerely hope you don't.

 

[ECpara]

Rilutek, unless you have good prescription coverage in your health insurance plan, can be very cost prohibitive. Without insurance it can be as much as $2000 a month now! But the good news, it is now available as a generic (rilizole). My husband was put on it the very day he was diagnosed. His insurance has always covered it, costing $100 a month. Now the generic is only $12 a month. My husband's disease progression is very slow so he chooses to stay on it, no side effects so far. Who knows, maybe this is why. His ALS doctor did tell him that it seems to be more effective in slowing progression in bulbar onset patients.

 

[Jwh1]

Just had pulmonary function test so they have a base line. There sending me to the ALS center in San Antonio for final diagnosis and treatment, still waiting for appointment. Becoming very anxious and overwhelmed.

 

[Jwh1]

Hello, and thank you for your time and comments. I just heard from the als clinic in San Antonio. I got my appointment, on aug. 26. Hopefully I can put this all behind me after that. But after doing some research on the Internet, I am really starting to think that this may be ALS. I am now becoming very anxious and nervous about what the prognosis is, I no this is irrational and doesn't help me or my family.but this has been a long two year ride and I am really nervous about the finish line for this prognosis. Thanks for all the support and I will let you know what happens. Jeff

 

[Txgirl]

I know how you feel and the thoughts running through your head. I hope they tell you it is not ALS. Please let us know. Take Care.

 

[Uptown]

Just had pulmonary function test so they have a base line. There sending me to the ALS center in San Antonio for final diagnosis and treatment, still waiting for appointment. Becoming very anxious and overwhelmed.

What were the values Jeff?

Suggestion: avoid Dr. Google and the Internet until AFTER your appt Aug 26. There is nothing left to do until then. Enjoy every day as this is truly a free period for you should, God forbid, you get the worst possible diagnosis. Every hour wasted in worry will never come back. Please...enjoy every moment now.

 

[Jwh1]

I have not got the results yet, unfortunately with the va you have to wait until the info marrys up with your records and then request a copy. ( usually the doctor performing the test will tell you, but this was a tech and they never tell you anything) but as soon as I get a copy I will post it. I am not a big Internet person and have barely ever messed with it until recently, and I had to learn something about als since the neuro prognosis was probable als. So I typed als into the keypad, pressed search and had the crap scared out of me. So yes I know better than to let that get to me but it is pretty hard. ( I kind of understand why so many people seem to obsess about this that post on this forum that clearly do not have symptoms of als). I will continue to try and stop the irrational behavior and enjoy my family as much as possible in this waiting period. And hopefully I really am worrying for nothing. Thank you for your continued support. Jeff

 

[Txgirl]

Jeff, Your behavior is not irrational. You actually have a doctor that believes you have a strong possible diagnosis of ALS. I know exactly how you feel. I was there a few months ago. It's scary as hell. Please come here anytime you want. I am still hoping your final diagnosis is negative but please know that you have support here. I will keep you in my prayers.