Diagnosis steps

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AlDowns

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I was recently seen by my neurologist who setup an appointment to “rule out” ALS. One week later, the department care coordinator changed the appointment to include interviews and assessments by the department chair, a social worker, and PT AND OT specialists.

My current symptoms include weakness in my right arm, atrophy in the right hand and wrist, and recently observed atrophy in the upper quadrant of my right shoulder. I have been seeing an increased or spreading of fasciculation from the right arm, then the left arm and now both shoulders.

It was the conclusion of both my wife and me, that the upcoming appointment is not the rule out ALS, but instead start the “treatment” and counseling for this onset.

Based on our readings, there is no shortage of what seems to be good information regarding this disease, we accept that this is certainly early stages. We have accepted that there will be no timeline available to us until we have a few months of tracking the progression. But we do understand that the progression is linear.

Long post, with no clear question. But looking for feedback on our current observations and circumstance.
 

lgelb

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I moved your post because without hearing more about your diagnostic process, it is not clear that you have been formally diagnosed and we always advise a second opinion anyway. Have you had an EMG? What clinic are you seen at? Did you ask the coordinator what the reasoning was for the new appointments?

Best,
Laurie
 

affected

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Try not to jump to conclusions too quickly.
Let us know EMG and clinical exam results after the appointment.
 

Nikki J

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Your symptoms are worrisome certainly. As others have said it isn’t clear from your posts where you are in the diagnosis process. Generally the process is clinical exam and then either emg followed by other tests to rule out mimics ( like mris and specialized blood tests) or testing for other things first then finally the emg. Then diagnosis confirmation / second opinion by an ALS specialist.

if you haven’t had all the tests and been told ALS I wonder if the appointment change was an administrative miscommunication? often the visit where you meet with everyone comes after the diagnosis one because taking in the diagnosis is such a shock they want you to come back after you have absorbed it

ALS progression is not usually linear by the way. Although after some time people often have an idea fast or slow progression can have plateaus, speed up or slow down for no discernible reason

you might want to access your current neurologist’s notes and any test results. If you have a patient portal they will be there. It sounds like your upcoming appointment is in the same system but if you have any tests or other relevant visits get your own copies to bring with you. Things sent between institutions don’t always arrive promptly

good luck
 

AlDowns

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The above feedback is all right on.
First, we agree, we do not want to jump to conclusions.

The first neurologist appointment was with an ALS and MS specialist.
My scheduled EMG is December 2nd at which time I am meeting with the long list of ALS Specialists and therapists. Included in the day of assessment is a Pulmonary Function Test.
I would suspect all of this is to develop the baseline from which we can track the progression.

The neurologist’s visit notes only share the intent to rule out the dx of ALS. But he had not yet seen the MRI. It was following the visit that the schedule for Dec2 became the full scale evaluation.

The clinic is the Fairview ALS Specialty Center in Minneapolis. Because it is an ALS specialty center, we do not understand the need for a second opinion, but that is open for our future yet of course.

Thanks for the insights you do provide.
 

Nikki J

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A second neuromuscular opinion is recommended because this is a life changing diagnosis and you want to be sure. No one is infallible. I am in Massachusetts. Mass General and UMass are extremely well known clinics with doctors who are leaders in their field and often lecture to other doctors at conferences. They do second opinions for each other frequently. Aside from the diagnosis itself it is often helpful to get a second take on how you are going to treat this.

that sounds like an extremely challenging day. Do you have to travel a distance to get there? Maybe they are trying to save multiple visits?
 

AlDowns

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Yes, I am scheduled for a return appointment on Thursday, December 2nd.

Looking forward to the full broad-based interviews and assessment process.
Wanting to put the wait and see behind me and then deal with the case worker and the related therapists.

Thanks all.
 

AlDowns

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Well, it is official. My neurologist, an ALS Specialist with MHealth at the Univ of MN, did his set of assessments today and at the close of the EMG process he sat down and shared the conclusion. I do in fact have that label of ALS.

During my next session with him we will be discussing the next steps - treatment and other considerations.
 

lgelb

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I'm very sorry.

We would still advise a second opinion for all the reasons Nikki outlined (Mayo based on where you are, maybe? Or Sanford in Fargo has a well-trained ALS lead) but I have changed your profile status. Give yourself time to process, and ask us anything.

Best,
Laurie
 

Bestfriends14

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I'm so very sorry to welcome you to this crappy club. However, the folks here are wonderfully supportive and knowledgeable. Please take one day at a time and lean on any support system you can. Hugs to you.
 

affected

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I'm so sorry, we were hoping with you of course.
Please be gentle with yourself as this settles over you.
 

AlDowns

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I am currently working through the communication of the DX to my 4 adult boys and their wives. 3 of the 4 have listened and struggling with wrapping their heads around what is coming. The 4th has strongly resisted hearing this news. I have an email in the works that will describe more details for those are not local to where we live. Then I will be writing a letter to my 9 grandkids telling them that Grandpa has ALS and you can expect to see - some list of changes - and no timeline.
I think that this communication process is helping me at the same time.

I do have a GREAT church family that is praying with us and is ready to support and comfort us over the course of the disease and then support my wife after I leave this earth and get to go home to heaven - such a joyful hope we have.

Thanks for the offers of support and answers.

Starting the search for necessary resources to assist in my daily living and mobility.
 

swalker

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AlDowns, you will experience an array of emotions as you go through this.

I am with others in recommending a second opinion. Realistically, with what you have reported, the second opinion will likely confirm what you have already been told. But, it is still worth getting. You never know!

I also encourage you to take your time processing this news. I am also a Christian, and found great comfort in the wise and compassionate words of my friends at church. Yet, still, I received much useless advice from some that encouraged me to seek out treatments that would have been both expensive and worthless (in my opinion). I encourage you to be wary of folks offering such advice.

This will take awhile to come to grips with. Each person travels a unique path. Rest assured that you will eventually reach a stage of acceptance. For me, that was the day I realized that nothing has really changed. I wake up each morning knowing that the day is a gift and I will try get the most out of it I can. No one knows what the future holds for them. We can only do our best to make the most of each day we are given.

Steve
 
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