Thomas3857

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I tied Vandy and wash U but appt times were not available until November. Whatever I have, the sooner I know the better. Hoping I’ll get some clarity.
 

Thomas3857

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Any thoughts on preparing for my Mayo trip? I was told to bring all my imaging discs, reports, blood work records,medications,etc but the impression I got was Mayo will want to do their own tests and exams anyway.

Post visit and assuming a diagnosis what do I need to bring home? I assume they will provide literature but this sites is likely way more informative. Is there an actual document that says this patient has ALS? I assume I would need that for SSDI, Clinic enrollments etc?

Just trying to prepare for the worst, while of course hoping for something other than ALS.

My symptoms seem to have worsened with the clonus especially - I can’t even count the beats as they are that rapid and continuous as well as shoulder pain and hand/wrist soreness bilaterally.

As always, thanks for any input. Sorry for the length of this thread. Tom
 

Nikki J

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Look in the general forum. At the top you will see resources. There are threads on second opinion visits and ssdi. My doctor does write a note x has been diagnosed with amyotrophic lateral sclerosis but you would need copies of notes and emgs for ssdi

I would concentrate on making a concise timeline of symptoms and also a very organized and concise question list.

I would also prepare as you would in a chess game thinking several moves ahead. That is, if I ask x and they say one thing then what would my follow up be ? And if they answer something else then what?

And your overall question is what is wrong with me. If there is not a definitive answer the follow up is what is still in the differential and how do we narrow it down.

Preparing is super important so you get your questions answered but you need to be organized
 

codyclan

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Thomas,
I’m still uncertain as to why you are assuming that the next doc is going to diagnose you with ALS. Will you believe them if they say no ALS? You still haven’t described ALS symptoms and you had a clean EMG less than 2 months ago. Like Nikki said, ask what’s wrong not what are the odds I might have ALS.
 

Thomas3857

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Thanks Nikki - I will certainly do as you suggest. I have found your responses both practical and comforting at the same time as I’m sure others have as well.

Thanks Cody - intellectually I think you make a good point. Problem is my anxiety has told my intellect to go sit in the corner and shut up. It’s in charge now!

My concern is that because my clonus was really my first warning sign (other than facs in December that the EMG labeled as benign) and I got into a neuro quickly there were only 6 weeks between the clonus discovery, the abnormal clinical exam (reflexes / clonus) and the clean emg.

Just seems likely that my EMG was done prior to ALS progressing to the LMN and hence the clean EMG. Toss in my worsening symptoms and add a big giant heaping spoonful of anxiety and that’s why I think I’m getting some bad news.

Thanks - Tom
 

codyclan

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If you get good news, will you believe it? You might want to ask yourself that question before you go.
 

Thomas3857

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Fair question - I certainly hope so on both accounts. Regardless of the outcome it’s become apparent to me that the old adage that life is 90% of how you react to 10% of what actually happens is unquestionably true.
 

nona

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I hope you do accept the next opinion and turn your attention to seeking treatment for the anxiety that you say is driving the bus.
 

Ken15

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I was told to bring all my imaging discs, reports, blood work records,medications,etc but the impression I got was Mayo will want to do their own tests and exams anyway.
The documentation you bring with you to the Mayo establishes a baseline or reference point. Yes, the Mayo will do their own testing (majority of testing is done onsite and results are usually available same day; though there are exceptions) as they deem appropriate and then will compare their results with the documentation you provided.

Make sure you sign up for the Mayo Clinic Patient portal. All notes, test results, prescriptions, etc, will be posted there. Any of these items can then be readily downloaded from the portal, if you wish.

The portal also has a messaging system, where you can message your "care team". Responses usually take a business day or two.

Ken
 

Thomas3857

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Thanks Ken - all signed up and did the questionares. Leaving tomorrow.
 

Bestfriends14

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A nearly 5 page long thread...I do hope you can accept the neurologists opinion of no ALS when you hear it. Then you can focus on what the suggested path to treatment will be.

Good luck to you.
 

Thomas3857

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Hi all. First, I want to thank all of the pALS who responded. Your advice and suggestions were very helpful and I appreciate the time and effort and most of all the good wishes.

Second, I wanted to let everyone following this thread know that after visiting Mayo Rochester I’ve not been diagnosed with ALS.

Third - for those of you fearful of an ALS diagnosis please learn from my experience and do not let health anxiety dominate your life. My neuro at Mayo attributed ALL of my so called symptoms to health anxiety - a diagnosis I received from a Mayo psychiatrist. It’s very real and for me quite debilitating.

My health anxiety coupled with a local neurologist identifying clonus incorrectly, mentioning ALS as a 20% possibility and a local psychiatrist telling me I had ALS all obviously contributed to my downward spiral but please listen to the pALS here who tell you about the risks of anxiety. It cannot be overstated. They know what they are talking about.

Wish everyone the best. Thanks - Tom
 

Nikki J

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Thank you for letting us know. Congratulations and best wishes for a long and healthy life
 
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