"possible" Diagnosis

[Hanson]

Anyone else here dealing with or have dealt with a "possible" diagnosis? I've been given this by 3 different specialists. Not sure where to go from here. Thoughts? Experiences?

 

[Dusty7]

Were they all neuros? What tests were done? What were "possible" diagnoses based on?

 

[Hanson]

They were all Neuros and ALS specialists. I have fasics, MRI finding pointing towards ALS (I know this is very rare), clinical weakness, and sometimes slurred speech (bulbar symptoms). My EMG is abnormal but doesn't fit the El Escorial criteria. None of them could tell me what "possible" means other than we do EMGs every few months to see if it progresses. What if it doesn't?

 

[Nikki J]

Is it a possible diagnosis or a diagnosis of " possible ALS"? The latter is based on an exam and emg with typical ALS findings limited to one area of the body.

 

[Hanson]

Sorry, diagnosis of "possible ALS".

 

[Will]

My PALS was diagnosed as "Possible ALS" and three years later it is the same diagnosis with little progression. Hang in there.

 

[Dusty7]

ALS is a progressive disease. If whatever you have doesn't progress, it's not ALS. I know that sounds crazy, but sometimes you just have to wait for the disease to reveal itself.

Progression sucks! No progression rocks!
Hang in there and good luck!

 

[bluedog]

What exactly did your EMG show?

 

[dfield00601]

It took me about 6 months to be diagnosed with als bulbar thats from lips to throught. the test that was used to finaly diagnose was a electro-pin test where doc put pins to contact nerves to some other points of the nerves two of them were off the chart, one was when pin was put in my toungn what I have learned is damage starts mabe years before symtoms and I have been able with Gods help to keep it mostly stable first I accidentaly saw 700 club when they did story on coconut oil two weeks before being diagnosted then looking at info here I found out about namenda xr 28 mg time released its one of 3, I know of that works on glutamate recepters so they dont pick up too much and the excess glutatamate poisons the nerves. I also read out loud to try to retain to say words and practice on karokey that seems to push my throught to srtengthen. also creatine helps to use up glutamine great for working out too. it seems to me the earlier these things ar started the better cause they help ed me to be more stable but not go back much, but strenthening throught is very important for swallowing.

 

[MaxEidswick]

>Progression sucks! No progression rocks!

ditto that!

 

[Hanson]

This is it verbatim.

"evidence of a chronic neurogenic process affecting the right C8 and distal left C7 innervated muscles and a chronic neurogenic process affecting the right tongue. This does not currently meets El Escorial criteria for amyotrophic lateral sclerosis"

 

[SMP51]

we were given a " it's not progressing as typical als does, perhaps with time it will reveal itself"> I realized als was marked on the diagnosis check out paper(the one you take to the front desk when you check out from an apt that has tons of little boxes they check for the insurance billing) before the doc ever difinitatively said als, not sure if this was before or after the mayo did a nerve biopsy. It was a good year of slow exceptance including spinal neck surgery to correct an old disc injury "just in case" that was the issue.
come to find out als is not typical, all cases run differently and we are pretty typical....chit

 

[Dusty7]

I believe the revised El Escorial criteria for a “clinically probable laboratory supported” diagnosis includes acute and chronic denervation in at least 2 limbs by EMG. Since you are only showing chronic denervation, you do not fit the criteria yet. Therefore, additional EMGs are not just to check for progression, but to look for acute (active) denervation. Until they find active denervation, or a spread of your UMN signs, you will most likely stay as “possible”.

I assume that a cervical MRI was done to rule out a C7-C8 radiculopathy and that the MRI was clean.

 

[Hanson]

Yes I've had the cervical MRI and it was clean. My Brain MRI wasn't. My Mayo records have 2 diagnosis, #Motor Neuron Disease and #Copper Deficiency. I am treating the latter with supplements but the MND is confusing to me since I can't imagine what else would cause it other than catching ALS too early to fit the criteria.

 

[lgelb]

They are just coding MND as a more general bucket that includes ALS because you don't meet the formal criteria.
Technically, there are other MND subtypes and with some of them you might live longer on average and become less disabled than with ALS per se. But, as I think most people here would agree, it is not just quantity of life that matters so if Mayo says you have an MND, you might want to begin planning for future disability beginning now.