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pilatesgal

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Learn about ALS
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ny
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vestal
Hi, I have not posted in some time because I felt like some were thinking I was a hypochondriac and I've actually thought I handled the past year of my life quite gracefully.
On 12/4/17 I was dx'd with ALS. Like all, I have been bouncing between all kinds of emotions. I am not back to ask questions, not at this time anyway. But, something that keeps resonating with me is the statement in the "read before posting column" that I kept clinging to through the dx process. My "wifi" signals are still to this date, not completely interrupted. I am not "failing" at anything yet. My als has been a slow, insidious, torture. Weakness and atrophy are primarily what I still experience. I wake everyday and lie in bed and wiggle my toes and my fingers and then slowly arise to see if any joint action is failing. By the grace of God that day has not yet arrived. Often my thoughts come back to this forum, and I think about the "wifi failure imagery" and how some are led to believe that we must be a hypochondriac if we fear als and we don't have failure. As I learn more about this dreadful disease and experience it in my own body it has become clear to me that as vast and varied as this disease progresses it also presents in the same manner. Though I experienced compassionate communication from most, there was this feeling that I was being judged as neurotically pursuing a dx. I read countless threads where others were being responded to in the same manner. Even as I type this I pray I am not sounding judgmental of anyone. Lord knows this can be much to bare for all. But, truth is a guiding force in my life and I felt compelled to share my truth. ALS can show up as insidious weakness without failure. At least it has for me. And I think it's important and compassionate to relay to others that in the mist of their trials and fears, not everyone is a hypochondriac. My prayers are with everyone reading this post. Jennifer
 
I’m so sorry your diagnosis was confirmed, but welcome.

I’d be interested to hear how the diagnosis was confirmed.

Im sorry you felt some on this forum may not have taken you seriously. One of the disadvantages of not seeing a person face to face or working with their medical team is that the information we receive may come across differently than it would in a face to face visit or after a careful review of your medical records. That said, we do the best with the information we have.

ALS presents and unfolds differently in each person affected by it. Everyone is unique.

I hope you benefit from the support and information you can find on this forum moving forward.

Best wishes,
 
I have re-read your posts and the replies. Your diagnosis now is astonishing.

Your second sentence above says you were diagnosed 12/4/17 yet there was a post you made on 12/13/17 were you were still being diagnosed.

As you wrote on that date.... (which may have been your 3rd or 4th EMG.)

"my Neuro had told me just a few weeks ago that he didn't see ALS on my EMG/NCV."

You've had four EMGs... can you post the summary/conclusion of your last EMG?

You may have misunderstood what you were apparently told concerning you having ALS.
 
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Hi Jennifer,

I went back and re-read all your posts.

Did you get your diagnosis confirmed at Johns Hopkins or with another neuromuscular specialist? I think that is extremely important. I had a very complex diagnostic course because I was so strong to begin with. I was dismissed during the clinical exam at one of the best centers in the country. They called me back after they got the results of the first EMG. It was a typical EMG for ALS but they still hesitated for 9 months because of my strength.

This disease does seem to present and progress in different ways but people who are diagnosed have EMGs that show active (fibs and positive sharp waves) and chronic changes in many areas tested.

The other question I had was did you get a complete pulmonary function test? That's important. What did they find in your sleep study? If you had issues in your sleep study and your pulmonary function test was not great, they should have given you a PAP machine.

Please don't hesitate to post because you were put off by some of us. We do our best. I was told it didn't look like ALS from a couple of members, too. We're no substitute for a doctor who can look at your body and compare it with your EMG.
 
Hi Jenn,

I'm so sorry to read of your diagnosis. I, too, re-read your posts and I'm sorry you left the forum last time feeling judged. Not a good feeling to have, I'm sure.

As of Nov. 28, 2017, your doc said that your EMG and NCS showed no signs of ALS and on December 13, 2017 you were still in the process of looking for a diagnostic conclusion, as you stated that you did not have one at that time. Your above post stated you were diagnosed December 4th, however. Did you mean the 14th perhaps? Did your local neurologist misread your EMG report? May I ask how they came to the conclusion of ALS all of a sudden? What a shock that must have been.

As for failure, you had mentioned that failure is not always present in one's body who has ALS to start with. I'm sure that's true, as each person is too unique to go by a one size fits all method. However, to give readers of this post context, failure is meant that you can no longer take a heel to toe step, stand on your heels and on your toes, write with a pen, open a bottle of water or button shirt or pants, for example. It's not an "I feel weak, but can still do all the things mentioned above", feeling.

There are parts of your body that you can no longer move, whether it be a pinch grasp or toe step. That's what is meant by failure. It's not an entire limb, just bits and pieces at a time that fails and when that happens, that's when atrophy sets in. For the majority, this is the onset of ALS, but, as you stated, not in every single case.

Thank you for coming back and sharing.
 
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