ALS vs Rare

[Clearwater AL]

May I gently remind all. Funding, research and pharmaceutical companies all look at numbers for the biggest bang for their buck. In one’s vigor to lecture and remind people ALS the rare of rarity you may not be doing yourself a favor. I am not suggesting the world needs more ALS. I believe ALS is becoming more common than currently considered. There is an unexplainable increasing number of Veterans being diagnosed with ALS. Years ago Alzheimers Disease was considered rare. Not any more. (Just recently "Inventor" made a post indicating that a long held belief that sensory involvement ruled out ALS but now that belief may fall too.)

Finally, an EMG does not indicate ALS. It indicates abnormalities and there are about 20 forks in the road that can go down. A neurologist telling you are “possible” or “probable” for ALS is not a confirmed diagnosis of ALS. There are about 5 forks in that road it may still go down. And, as I was reminded… being referred to an ALS Clinic does not mean you have ALS. I’ve been held to task for accuracy so let’s also be accurate to those who claim to be diagnosed with ALS.

But, that’s really a matter of honesty within one’s self… being that no proof is required

Ok, rip it up. I've got thick skin and I admit when I'm wrong. Have at it.

 

[SMP51]

EMG is only one of the steps to diagnosis, nerve biopsy is needed as well.
is this what you are asking? guess I don't get your point "that's really a matter of honesty within ones self....being that no proof is required"?

 

[Clearwater AL]

I'm not clear on your reply so I'll try. I have read all of the posts of many. I believe (my opinion) there may be some who have stated in their bio they have been diagnosed with ALS because their Neuro Doc has said "Probable" - "Possible" or they have been referred to an ALS Clinic. They do not have ALS until they get a confirmed diagnosis of ALS. On this Forum (any Forum) no proof of confirmed diagnosis is required. For those like yourself they take away from the "real world" help you can offer. I belong to a couple of Military Forums and on one we found a guy who claimed to be a Decorated Viet Nam Combat Veteran... but never served a day in uniform. On Forums it's honesty within one's self.

 

[SMP51]

ok, I see now where you are coming from.
yes, I have seen a few hypocondriacts post in here, just self diagnosed and sure they have ALS. They are generaly figured out fairly quickly like your fake decorated Vet.
and then there are folks who are in the process of getting some sort of diagnoses looking for answers here and scared shitless because their doctor said possible/probable

 

[AfraidButNotAlone]

Now, I'm confused.

I was diagnosed as probable by a neurologist who admittedly is not a MND specialist.

I then went to an ALS clinic (Emory University) with my test results and was told that it all points to ALS.
I asked if I had ALS and was told that I present all the classic symptoms and that there were no other diseases that matched all my symptoms.

What does that mean?

 

[Nikki J]

Hi Afraid
Neurologists use something called El Escorial Criteria to stratify ALS and it leads to a lot of confusion. If someone goes to a neuro and asks if they have ALS and are told might be but you could have bfs or ms pinched nerve the patient might say I have possible ALS. That is not what a neuro means when he or she says possible ALS. The most they would say for this patient is suspected ALS.
Possible, probable and definite ALS by El Escorial criteria require upper and lower motor neuron finding and a pattern of progression within the area. Possible is one area probable 2 and definite 3. A person could have some findings in an area but if they do not rise to the level required that area might not be counted. Generally at the point of possible ALS by El Escorial the neuro is sure of the diagnosis. Hope this helps a bit

 

[AfraidButNotAlone]

She said that I have ALS and to make plans accordingly.

No pinched nerves.
Bad EMGs on four limbs (about 60 sticks total).
Weakness progression.

I have an appointment in December at the clinic. I'll be sure to ask more questions.

Thanks Nikki

 

[Clearwater AL]

From what I've read Medicare, insurance, VA and etc need a "confirmed diagnosis" to get the help you need. (Some call it "benefits" but I think "help" is more fitting for those diagnosed with ALS). I could be wrong.

 

[Nikki J]

I think that most neuros when they fill out the disability etc paperwork just put ALS rather than the El Escorial classification. Those who specialize in ALS know what will go through and what won't. If you are at this stage it is worth having a frank discussion with your doctor. If you are going to be applying for medicare and VA benefits tell them They will not lie on your record of course but they have been through this before and know the things that will help the process along. I don't think I am explaining very well. When people meet the El Escorial possible and probable criteria the neuro is really sure it is ALS

 

[SMP51]

EMG is only one of the steps to diagnosis, nerve biopsy is needed as well.

@ AfraidandAlone.
I need to also add that Steve was put through a huge battery of blood tests (24 vials worth) 2 extensive MRIs, IVIG and steroid infusions treatments with no success to rule out CIDP. When the CIDP was ruled out then the Nerve biopsy was done, it was the last test.

 

[AfraidButNotAlone]

I haven't had nerve biopsy.
Had MRIs
Blood tests, but not that many.

 

[johnnyliverpool1]

muddywaters...... johnny

 

[Clearwater AL]

I guess we all can agree that with some people ALS presents itself openly without a doubt to their neurologist. For many others the diagnosis is elusive, baffling, confusing, complicated and a long drawn out process of fright, frustration and unknowing.

 

[Mediasmart]

Actually the original post pisses me off. I've had 4 docs including 2 neurologists point me in the direction of ALS. The ALS clinic I go to points me toward ALS. I asked the head doc at that major clinic who is treating me/following me why he didn't just come out and say the magic words that would seem to satisfy "Clearwater", to which he responded it was their protocol guided by malpractice considerations and other matters to make a final diagnosis until I reached a certain level on the scale. But as he said, it doesn't look like it is anything else...walks and talks like a duck.

Very few would brand themselves with ALS unless there is some mental disturbance going on that prompts one to seek that thrill of sympathy.

 

[Clearwater AL]

Well... until you reach that "certain level" you have not been diagnosed with ALS. Others apparently have reached that level your neurologist refuses to elevate you to at this time. It's between you and your neurologist. I have had two doctors tell me I'm looking at a MND but until I get a confirmed diagnosis of whatever I'll leave my Forum bio interest as it is. Maybe the next time you see your neurologist say to him, "Enough is enough... you've told me enough that I am convinced I have ALS, with a written diagnosis I can apply for help (benefits) I would be entitled to." If you are receiving benefits it has been
written somewhere you have been diagnosed with ALS. They just haven't told you yet. From what I have read about ALS... I hope, there is still hope, you may have something very similar but not fatal. (All I said was, "An EMG does not indicate ALS." If one, by itself, tells a neurologist "That's ALS!" somebody please jump in and say, "Yes, an EMG report will say, "This is ALS.") I've been wrong before and admitted it.