I'm new too...

[Nikki J]

yes the ncs would be shocks. The needles would be emg. If you have not already done so please read the important post on getting a diagnosis at the top of this subforum. Also there is a similar one on second opinions in the resource section under general. These will help you prepare for Mayo to get the most out of your visit. One thing advised is to have your own copies of allyour tests and doctor notes. They should be sent in advance of your visit but having your own too is a good idea. I would consider reading them in advance of my visit to better prepare. I did read my records before my second opinion

much of this may be on a patient portal that you can just print out but some you may have to request. It is your right to have them

 

[Mike C]

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I am going to Mayo Clinic here in Jacksonville for my 2nd opinion the first week of March. My Neurologist is leaning towards ALS, I didn't push him for a % of confidence but he said he diagnoses 5-6 cases a year. That number doesn't add up for me though, if ALS is diagnosed in 2 per 100K, he would have to see over 200K patients per year?

I'm just going to see what Mayo determines, I've been worrying myself for over a month, starting to feel like it is what it is....

 

[Nikki J]

We ask undiagnosed people to post only to their own thread.

to answer your question. your numbers would only be valid if every person saw a neurologist. Most people in the population never see a neurologist for anything let alone to be evaluated for ALS. I bet My neurologist diagnoses probably 100 plus cases a year. She works in an ALS clinic so she has a very skewed population.

a non neurologist such as an internist may only see a handful on ALS patients in their practice

 

[Mike C]

<quoted text removed>

Thanks again for the info

 

[Mike C]

My second opinion at Jacksonville Mayo Clinic confirmed the onset of ALS. Yesterday was the hardest day of my life... I've stayed away from the forum until the diagnosis but will be participating more as there are a million questions....

 

[Bestfriends14]

I'm so sorry that you were diagnosed. As one forum member so wisely told me when my husband was diagnosed "there will be big changes coming in your life, but they are not all happening today". In other words, take one day at a time and feel free to ask questions. The forum members are kind, supportive, and informative.

 

[Nikki J]

I am very very sorry to hear this.

of course you are in deep shock. We are happy to answer any questions. When you are ready also dip into the threads in the resource section found in the general subforum. We tried to includethingspeoplemightwant to know. Take them in little bites though

 

[KarenNWendyn]

Sorry for the news. We’re here for support.

 

[EricInLA]

Sorry to hear it. I had that "hardest day" myself about 6 weeks ago, so I'm right there with you. It's not how I wanted to celebrate my 50th birthday. But this forum is great for support and practical info. I like the advice above that even though this disease causes major adjustments, you don't have to make them all today. I'm sure you are in shock, but over time it wears off. I find I"m grateful for every thing I am still doing, and for every day that I can still do it, whatever "it" is on any given day. Definitely look through the resources section mentioned above, whenever you feel ready to do that.

 

[KevinM]

Damn. So sorry, Mike. I’m here in Tallahassee if you ever want to have a private conversation through the “conversations” link at the top. Wishing you the best during this upside down time. Kevin M.

 

[KimT]

I'm sorry, Mike. Who is your doctor at Mayo? The good thing about Mayo is they can treat any condition there and will refer you to other specialists, as needed.

I have a primary care at Mayo and they have an extension center in St. Augustine. It's good for record sharing and getting fast referrals. Very professional and clean. All your records are uploaded on the same day.

Remember to take good care of your general health, including vision and dental. Do some fun things and ask your doctor about clinical trials available.

 

[Mike C]

I'm sorry, Mike. Who is your doctor at Mayo? The good thing about Mayo is they can treat any condition there and will refer you to other specialists, as needed.

I have a primary care at Mayo and they have an extension center in St. Augustine. It's good for record sharing and getting fast referrals. Very professional and clean. All your records are uploaded on the same day.

Remember to take good care of your general health, including vision and dental. Do some fun things and ask your doctor about clinical trials available.

I'm working with Dr. Oskarsson at Mayo, they also got me in to the St Augustine location for primary care. I'll be seeing Dr. Riffe on Wednesday. I'm new to the area and didn't have a primary Doctor.

I'm guessing everyone registers with the CDC and ALS Association?

 

[Mike C]

Thanks you for the replys.

Damn. So sorry, Mike. I’m here in Tallahassee if you ever want to have a private conversation through the “conversations” link at the top. Wishing you the best during this upside down time. Kevin M.

Thank you Kevin

 

[Mike C]

Sorry to hear it. I had that "hardest day" myself about 6 weeks ago, so I'm right there with you. It's not how I wanted to celebrate my 50th birthday. But this forum is great for support and practical info. I like the advice above that even though this disease causes major adjustments, you don't have to make them all today. I'm sure you are in shock, but over time it wears off. I find I"m grateful for every thing I am still doing, and for every day that I can still do it, whatever "it" is on any given day. Definitely look through the resources section mentioned above, whenever you feel ready to do that.

Thank you Eric

 

[Mike C]

Sorry for the news. We’re here for support.

Thank you