Diagnosed in October

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dldugan

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PALS
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09/2018
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Mahomet
After nearly 4 months of tests and 2 EMGs I have been diagnosed with ALS. Looking back a few years I can see small changes in health that progressed to this diagnoses. Next month I will be 77.

I am going to my first visit at an ALS Clinic (Indianapolis) on Tuesday and am preparing a list of questions. Any suggestions?
 

Nikki J

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Welcome. I am sorry you have to join us but glad you found us.

There is a sticky on second opinions/ first clinic visit in the general section that you might want to look at. It is one of the labeled important post.

Clinics run differently. You may see everyone every visit or you might only see the people you need. I only see the doctor and the PT because that is how my clinic works. Take a sweater, drinks and snacks. Some clinics provide these. Others do not.

Find out who to contact with questions and how. My clinic prefers email for non urgent matters and I have a primary nurse. Collect business cards.

Your clinical questions will depend on your situation. Is your diagnosis solid? Do you need any confirming tests? Do you need to talk about equipment ( power chair, bipap?). Do you need to discuss a feeding tube? Voice banking or a consult for communication assistance? Do you need OT for a home assessment?

I make a list of questions and print it out. I try to refine it so it is not too long

Hope this helps a bit. Please feel free to ask questions. There is a ton of information in the important post stickies and in the threads. The search function can help a lot if you have a specific issue. Don’t try to read it all at once but take what you need
 

KimT

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Just make sure you take someone with you or someone is taking you. I've gone solo and it is truly exhausting.

Even if your clinic provides food/drink, consider the type of food you eat and take it.
 

dldugan

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203
Reason
PALS
Diagnosis
09/2018
Country
US
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illinois
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Mahomet
My first clinic visit went well. Next week I will get a Trilogy to use at night.

I noticed this morning a red spot on my outer right thigh. Looks to be about 1 3/4 by 3 inches. May be a small area of rash, but hard to tell. Is a rash something I need to watch out for ALS wise?

Also getting a foot "brace" for right foot to prevent occasional foot drop when tired. Any suggestions?

And last, looking for a good rollator for walking longer distances (fatigue is an issue). Medicare and insurance pay too little to worry about recovering cost. The NITRO looks to be a good solid unit. Any recommendations/suggestions?
 

Nikki J

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Reason
PALS
Diagnosis
04/2014
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Skin problems are fairly common in ALS but you are not immune to normal things too. If you would have got it checked out before do so now.

Love my brace it is an Ottobok walkon reaction. By prescription but the orthotist had it in stock and just cut the foot plate to fit.
 

KimT

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It wouldn't hurt to get the rash checked out. I believe it's important to take good care of your general health.

At first my attitude was "why bother." But after the shock wore off I decided to get my eyes checked, got new glasses, got a crown repaired and scheduled another crown.
 

KarenNWendyn

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The Nitro walker is good. I have one.

I use the Allard toe off AFOs and like them.

Agree with getting the rash checked out. It could be fungal and easy to treat.

Yes, definitely take care of your general health. You’ll feel better.
 
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