Diagnosed as “possible to probable” July 14

MikeinAlabama

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I was diagnosed as possible to probable ALS on July 14. I hope I got the reason I’m here correct in my information under my name. I’m 54 years old and I’m expecting good days and bad days. It has been a complete whirlwind of appointments and new terminology since then. I am preparing for and attacking my treatment therapy as if I do have ALS while holding on to hope that there is still a chance they are wrong. I have some appointments lined up for second and 3rd opinion however, I feel pretty confident my diagnosis is accurate. I hope to gain valuable information from these forums as well as make some new friends. Thanks.
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Nikki J

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Hi
sorry to welcome you!

who diagnosed you? I am glad you have 2nd opinions planned. Hopefully with ALS specialists at major medical centes.

possible to probable sounds odd. There is a system called El Escorial which gives diagnostic criteria for ALS. Possible ALS by El Escorial doesn’t mean maybe ALS it means you have ALS ( by emg and exam) in one area the usual areas are bulbar, upper extremities and lower extremities.
probable ALS means two areas affected

definite means three

however el escorial possible is considered a diagnosis and will get you into many clinical trials.

so if you aren’t sure something to clarify at your next appointment.

sorry to rant but these criteria are so very very confusing to many. When the terms were made up we didn’t have as good techniques ( like advanced mris) for ruling out mimics. These days if an ALS specialist says el escorial possible there isn’t a lot of doubt ( though second opinions always advised
 

MikeinAlabama

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Nikki. Thanks for the reply. Neurologist diagnosed me. I forgot to mention that I have a brain tumor as well. That little surprise was revealed on July 14 too. I have followed up with a neurosurgeon. I digress... I had a nerve conduction study, EMG, MRI of brain and spine plus a boatload of blood tests. As far as El Escoria, that term was never mentioned but it doesn’t mean he wasn’t using it... maybe he just didn’t verbalize it? However, I have been accepted into the MAYO clinic Rochester campus (first appointment August 11) so there will be little doubt after 3-5 days there.

Edit to add my symptoms are lower extremities.
 

Nikki J

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Sorry to hear about the brain tumor. If you have yet to see a neuromuscular/ ALS specialist have some hope that the ALS diagnosis is incorrect. As you say Mayo will provide you with an expert opinion

there is a post in the resource section that gives advice on second opinions which should be helpful Resource - Second opinions and first clinic visits
 

EricInLA

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Mike - Sorry to have to welcome you to this forum. With that said, this forum is a great resource as there a lot of helpful and empathetic people here.

I was also diagnosed (at age 49) with a "possible ALS" categorization, though the neuromuscular specialist who diagnosed me said he was pretty sure it was ALS. He only mentioned the "possible ALS" terminology when I asked him which category I fell into on the El Escorial scale. But as Nikki says, the criteria are confusing. I think the "possible" wording is terrible because that's not what it means. In any event, I still hold out hope that these doctors are getting it wrong even though I know that's not likely. But sometimes the hope it provides gets you through the day. (although today the resumption of baseball and basketball is what got me through the day)
 

Clearwater AL

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This diagnosis Neurologists give patients of "possible/probable ALS" ( El Escorial scale) puts
them in a limbo worse then the limbo they went through leading up to that.

SSDI requires the diagnosis code for ALS before benefits can be granted.

Maybe more knowledgeable in this matter may chime in.

My thoughts go out to these folks.
 

Nikki J

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Those diagnoses should be coded as ALS and get ssdi. There is no diagnosis code for the different el escorial criteria. A significant number of PALS die as El Escorial probable and probable will get you into any ALS trial if you meet other criteria. Possible gets you into a lot. Think about it, by the time you are definite El Escorial you have all limbs plus bulbar and probably don’t qualify for trials due to symptom length and or severity

Dr Bedlack had an excellent video explaining all of it but I can’t find it. El Escorial were really research criteria to start with

someone with confirmed El escorial possible should get ssdi when they meet the waiting period if they have credits. They should be offered Riluzole and Radicava and told they have ALS.
 

Clearwater AL

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Nikki, not disagreeing with you but I have read that "should" isn't working out for many.

Key word "should."

As you wrote... " There is no diagnosis code for the different El Escorial criteria." ?

That's what may cause so much confusion.

I guess it's why we see so many commercials for law firms eager to help people with
their disability claims.

Back to you... I probably should have stayed out of this.
 

KimT

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I think one of the issues, at least when I was going through the diagnostic process, was that one neuromuscular specialist said to me, "it's possible that you have ALS but not probable." I already knew about the El Escorial criteria and asked him to clarify. He said, "No, I'm not talking about the criteria, I'm talking about what I believe based on my exam." After he saw the EMG, he changed his mind.

I wanted to make sure I didn't monkey around with getting denied so I reviewed letters from two neuros before I sent the package to SS. The package contained some rule-out tests, an EMG, letters from two doctors, and a cover letter I wrote that made sure the claim was expedited in accordance with TERI. I put the cover letter on top and went to SS office in person. When I was called up I made sure the clerk understood TERI and he did.

So some doctors still use words like possible and probable that might not necessarily refer to El Escorial criteria. In Japan, they have a different set of criteria.

Just make sure you read the doctor's letter and if it doesn't look right, have them write it again.
 

Clearwater AL

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Kim, it's good you are so skilled at this. However, so many in this limbo are not.
If I remember correctly... this was nearly your profession before you began the
road to a diagnosis.

There are many who lack in computer skills, clerical skills, communication skills,
terminology and dealing with SSDI bureaucracy.

Hopefully as more may chime in... it will be helpful to those I have described above.
 

KarenNWendyn

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A sad welcome, Mike.
 

[email protected]

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This issue can also affect eligibility for VA benefits. ALSA and PVA had to get my Mayo neurologist to say that my "possible" ALS by El Escorial criteria was in fact really ALS to all intents and purposes. I was approved for VA benefits within days.

Ed
 

KimT

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Al, I always tried to help low-income folks with taxes and insurance. I taught Personal Financial Planning for years and ended up with so much pro bono work I had to close down my real public accounting practice and teach full time.

I will say what I went through during the five months after my diagnosis was a living hell. I was trying to take care of my brother, who came to Florida, then got pneumonia and Fred (my current housemate) who nearly died from bleeding out when he cut his arm trimming shrubs. Instead of dialing 911, he called me. Between work, Fred, my brother and a runaway dog, I felt like I was in an episode of the Twilight Zone. Then, my boss turned on me because I used the Family Medical Leave Act to take care of myself, my brother, and Fred. She was an attorney and tried to get the college to fire me. I filed a formal complaint and HR agreed with me. They let me stay on the payroll until my sick leave was used up which was longer than my five month wait for Medicare.

Yes, this is much harder for most. But I don't have a CALS to help me nor do I have any close relative who can help. I just try to live each day and hope I die in my sleep when the time comes.
 

Angeld

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Kim T,
Is there somewhere I can look to see what information is needed in the letter from the doctor? I was just recently diagnosed and asked my ALS clinic for a letter form the doctor so o can start the process. This was a few weeks ago & I'm still waiting on the letter.
 

KimT

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Here is one example from one neurologist. The patient was awarded SSDI in two weeks:

Diagnosis of Amyotrophic Lateral Sclerosis (335.20; ICD-10-CM G12.21)
Patient Social Security Number: XXX-XX-XXXX

There is no one test or procedure to establish the diagnosis of ALS. This diagnosis was based on patient history, neurological findings consistent with Amyotrophic Lateral Sclerosis and electrophysiological and neuroimaging testing (including the attached MRIs and bloodwork) to rule out other impairments that may cause similar signs and symptoms. Also attached is EMG.

Clinical findings included both upper and lower motor neuron signs and measured progression.
Upper motor neuron findings:

  • Hyperreflexia (exaggerated tendon reflexes) in the presence of muscle atrophy and weakness progressing to all four limbs
  • Spasticity in both legs
Lower motor neuron findings:
  • Muscle atrophy in all four limbs
  • Subjective progressive loss of strength in all four limbs
  • Visible fasciculations beginning in left foot and progressing to entire body within a period of 12 months.
 
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