Waiting for Dx

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WhatNow

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Back in January I was out walking with my husband. My left foot dropped, and I tripped and fell on my face. By April, people were asking me why I was limping. In May, I tripped over my own foot again. In June a friend asked me if I could walk on my heels (no) and suggested that I see my GP asap.

Since then I have seen a neurologist for an EMG, have been referred to a neuromuscular clinic in a nearby city, and I’m waiting on MRI scans on neck and spine. The last specialist I saw was talking about ALS but I do not have an official diagnosis. My next appointment is not for another six weeks. I am stumbling over my feet (usually right foot) regularly and am getting a brace to help with the drop foot.

Since I was not really expecting such a serious condition, I was pretty free with information to friends and family about upcoming appointments. I do not want to talk about any of this with them right now.

I believe it will be an ALS Dx. How do I not go completely crazy until I finally get some answers?
 

lgelb

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If you could post your EMG report, we could be more helpful. Not knowing what exactly has been found or said, ALS is far from the only condition that could cause impaired gait, as well as one of the rarest.

You can certainly tell friends and family who inquire that you are in a diagnostic process and that you will circle back when more is known.

As for not going crazy, one of my mantras is, "Live your life until you can't." Easier said than done, but much more rewarding than the alternative.

Best,
Laurie
 

Nikki J

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Your symptoms are concerning yes. And not knowing and waiting is very hard. Getting your emg report might give you insight into where you are in the diagnostic process. That might help you to know

a brace will be very helpful as it is so important not to fall

perhaps see if you can get a professional counselor to talk to. I believe your problems are real and your concerns seem normal but if you can’t talk to friends for whatever reason It might be good to get support through the process whatever direction it takes
 

Bestfriends14

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Hi Whatnow,

I'm so very sorry to hear of the issues you have been having. I'm glad you are going to see a neuromuscular specialist as your progression of symptoms are troubling. Until then, try to keep yourself busy with family, friends, and hobbies, all safely of course.

The most important thing I can give you advice on is to keep yourself safe and try to avoid falls. When are you getting your brace? Do you have a cane? You do not want to fall and hasten any type of walking issues.

Again, I'm so sorry to hear of what you're going through. The folks here are wonderful and supportive. If you have any questions, please ask away. As well, after your next appointment, please update on how things went.

Hugs to you.
 

WhatNow

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Thank you for your reply Nikki. I wasn’t given a copy of the EMG. Covid is making it hard to get anything accomplished. We are waiting for bloodwork for antibodies to rule out some other disorders.

The doctor I saw last is an ALS specialist. He said ALS is a diagnosis by exclusion so he is waiting for further tests (MRI scans) but...

My daughter is an RN in hospice, and she was getting the same vibe from the doc as I was. He couldn’t give a definitive diagnosis at the last appointment, but the chances of it being something else are very, very slim. I’m just so frustrated being in limbo. I live in a very small town, at least an hour from a city, so services like counselling are hard to come by.
 

Nikki J

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Online counseling should be an option. I think that is the only kind of visit for counseling anywhere right now
 

lgelb

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Even if ALS is the diagnosis, a second opinion is always advised. You certainly have a right to the EMG report, which can be emailed or made available to you through an online portal.
 
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