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cadallante87

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Sep 12, 2012
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3
Reason
Loved one DX
Diagnosis
09/2012
Country
US
State
IL
City
Chicago
Very confusing time for us and I'm just trying to learn as much as possible. Anyhow, my mom was diagnosed last week. She has been having a hard time walking since 2008. She's been to multiple hospitals, including mayo, and they ran many test. Dr. at mayo said she's a complex case, with no definite answer beside lower motor neuron neuropathy. They had her take ivig, and stated if it worked, she most likely had an autoimmune disease. Well, it did not really improve anything.

My question is, if she had ALS wouldn't she had progressed even further already at this point? Yes, she does have a hard time walking and balancing but she still does walk and cleans the house, etc. She does get twitching in her hands but still has fair function with them. Could she just have a real slow progressing case? I worry that she may have something else, that actually has treatments available, but it being unknown to herself or doctors.

I've read there are strict protocols for diagnosing ALS. Can someone give me ideas what those are? It's kind of weird to think this serious of a disease has no definitive test. I'm not really in denial because she was diagnosed at one of the best ALS clinics. Just looking to dot my i's and cross my t's here.
 
El Escorial Criteria for the Diagnosis of Amyotrophic Lateral Sclerosis (ALS)
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Written by G. Firman MD **
Friday, 13 February 2009 10:50
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The diagnosis of Amyotrophic Lateral Sclerosis (ALS) requires

A. the presence of:
(A:1) evidence of lower motor neuron (LMN) degeneration by clinical, electrophysiological or neuropathologic examination,
(A:2) evidence of upper motor neuron (UMN) degeneration by clinical examination, and
(A:3) progressive spread of symptoms or signs within a region or to other regions, as determined by history or examination, together with

B. the absence of:
(B:1) electrophysiological and pathological evidence of other disease processes that might explain the signs of LMN and/or UMN degeneration, and
(B:2) neuroimaging evidence of other disease processes that might explain the observed clinical and electrophysiological signs.
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Diagnostic Categories

Clinically Definite ALS: is defined on clinical evidence alone by the presence of UMN, as well as LMN signs, in three regions.

Clinically Probable ALS: is defined on clinical evidence alone by UMN and LMN signs in at least two regions with some UMN signs necessarily rostral to (above) the LMN signs.

The terms Clinically Probable ALS - Laboratory-supported and Clinically Possible ALS are used to describe these categories of clinical certainty on clinical and criteria or only clinical criteria:

Clinically Probable - Laboratory-supported ALS: is defined when clinical signs of UMN and LMN dysfunction are in only one region, or when UMN signs alone are present in one region, and LMN signs defined by EMG criteria are present in at least two limbs, with proper application of neuroimaging and clinical laboratory protocols to exclude other causes.

Clinically Possible ALS: is defined when clinical signs of UMN and LMN dysfunction are found together in only one region or UMN signs are found alone in two or more regions; or LMN signs are found rostral to UMN signs and the diagnosis of Clinically Probable - Laboratory-supported ALS cannot be proven by evidence on clinical grounds in conjunction with electrodiagnostic, neurophysiologic, neuroimaging or clinical laboratory studies. Other diagnoses must have been excluded to accept a diagnosis of Clinically possible ALS.

Clinically Suspected ALS: it is a pure LMN syndrome, wherein the diagnosis of ALS could not be regarded as sufficiently certain to include the patient in a research study. Hence, this category is deleted from the revised El Escorial Criteria for the Diagnosis of ALS.
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Since they gave an ALS dia gno sis, I'm assuming they found UMN and LMN? All will suggest a second opinion with a neuromuscular specialist with experience in ALS.

Hope this helps, and isn't just more comfusing
UMN are things such as hyper reflexes, positive Babinski and other patho logical reflexes. Muscle spasms and spastic limb issues, myoclonus....these things are found easily upon cli in cal exam.

LMN are things like muscle weakness, atrophy, diminished or absent reflexes...and will show on EMG.

You will note it says other causes must be ruled out. CIDP which is treated with the drug your parent was given IVIG. Various neuropathies are also ruled out.

If all they have found are LMN issues, they will continue to watch and observe for changes and/or progression. ALS is insidious. It's difficult to nail down, and they want to be very sure for obvious reasons.

Many do progress rather slowly. Others, quite quickly. Sounds like your mom is in the "slow" range, which is great.

ALS has many mimics, too, which is why so many tests are done.cthere simply is not one test that can say yeah or nay.


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Long detailed answer, off to moderation, of course
 
Search for the El Escorial Criteria for ALS diagnosis.
 
Diagnosis is a process of elimination. (notme's tag line says it well)

There's current research underway looking for biomarkers. Check out the NEALS's site or CDC dot gov for clinical trials.
( northeast Als consortium dot org. They have a news feed for fb)
 
Honestly, if you're looking for a second opinion, I'd stay as far away from MAYO as I could.

ALSA has a list of great clinics.

Assuming the diagnosis is confirmed, there are a bunch of very helpful people here. Please post questions in the ALS portions and the Caregiver portions.

The DO I HAVE section isn't read by as many with great info to give you, as so many are frustrated by the sheer number of those worrying about ALS not listening to common sense.

Your mom should apply for SSDI as soon as she can. With a confirmed ALS d x, she will be approved, and the 2 year wait for Medicare will be waived as well.

The ALSA also has wonderful information and links to resources. We are all here to support you and your family however we can. Your mom is welcome to join as well.
 
Actually, mayo was her first opinion and she's now with the Northwestern ALS clinic. She's a very strong lady and is coping fine. I think I'm the one having a hard time with this. We lost my father young at 57, about 7 years ago. My uncle (his brother) whom I'm very close to had a debilitating stroke 2 years ago(dmentia now), and now my mom at a young age of 59 has ALS. Yup, I have my hands full.

I've been begging her to file for disability for 2 years almost. She finally did it Monday. Good to learn medicare will kick in instantly!

LOL, I read the stickys after I posted and realized this was an awkward board area.

Thanks for the information and best to you all!
 
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