9 months on - feeling worse and worse

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spbalazs

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I am sorry for posting again, and dear community, please don’t be upset with me.

I wanted to write a quick update on how I am, and see if any of you could perhaps advise on what I should do next.
 

Nikki J

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You don’t provide any details of how you feel worse but whatever you are feeling the first step is to visit your doctor and the second is to follow their advice. I believe one of your doctors advised you to stop looking on the internet which is wise.
 

spbalazs

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I am sorry for posting again, and dear community, please don’t be upset with me.

I wanted to write a quick update on how I am, and see if any of you could perhaps advise on what I should do next.

A brief summary of what happened so far:

-8 months of bodywide twitches. Sometimes large twitches that move my shoulder, or my head a tiny bit.

-Left leg feels weaker and weaker. Sometimes trembles. Just the left.

-Difficulty breathing. It really is such an effort and makes me so tired.
I can not fill my lungs up. I can’t do a proper yawn. I practice belly breathing and meditation every day and I strongly believe this breathing problem is not because of anxiety.
I reach a point on an inhale when my abdomen just start shaking and I can’t fill it up further.
FVC for the past 3 months have been between 87-93% however.

-Difficulty swallowing. No globus sensation. I have to swallow 2-3 times per bolus and even then some residue is stuck at the back of throat.
ENT examination couple months back was fine except retrograde flow of bolus. Since then I get regurgitation - stomach content flowing back to my mouth- a lot.

-My partner confirmed that indeed having issues pronouncing some words such as “remember”. It is as if the my lips and tounge don’t move to the right place.

-MRI and all blood test were fine. The only exceptions are CK levels which have been constantly elevated. Tested 4 times and it was between 400-1000.

Most recently I have seen an ALS specialist, and a neurophysiologist professor 3 months ago. This was the third EMG which was all fine except fasicultions in multiple muscles.

The only thing which I found strange that the affected leg barely made any sound when I contracted my muscles. And I was trying like there is no tomorrow.
The other, non affected leg made a loud sound on contraction.
I would think this has no clinical significance because it was not mentioned on the report.

Couple of questions, I thank you very much for your patience and your answer.

  • Are regurgitation, reflux, stomach pain can be associated with ALS?
  • Could respiratory onset ALS present in such manner, that perceived weakness would affect multiple muscles at the same time? (Lungs, legs, throat and mouth?)
  • All 4 chambers of my heart expanded vs. 18 months ago. it is just within the normal limits still. I understand heart issues have nothing to do with ALS

I am not chasing an ALS diagnosis but because of the presence of fasiculations and because every single test is coming back normal, with the exception of CK, and I genuinely feel worse and weaker as time goes by, my mind is keep coming back to ALS.

I would mention that I tested positive for Lyme disease by IGENEX. My GP and a Lyme specialist both said this would be a false positive.
 

ShiftKicker

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Past threads here:



Hello-

You have had 3 emgs and been examined by an ALS specialist as well as other specialists. Instead of asking for the opinions of strangers on the internet, I am wondering what the ALS specialist had to say about what you report and based on their clinical findings? While your mind keeps coming back to ALS, which does indicate a fixation, what does the person whose very specialty it is to detect it say? What are they telling you the next steps are?

What are you doing to deal with your very real and life affecting stress while you search for answers? This is not a dismissal of your symptoms, but a recommendation you find some help and support while you deal with the overwhelming stress of an unknown health condition? The folk here are not qualified to support you in this, but that does not mean you aren't deserving of support. While things don't seem to be pointing towards ALS, no matter what you feel, that doesn't mean there isn't something wrong. You need someone who can help you navigate things instead of posting on a forum for ALS and adding to your stress.
 

spbalazs

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Hello Shiftkicker,

I do really appreciate your answer. Thank you for taking the time.

I am relatively calm about the situation. I do 60 minutes meditation every day as well as breathing exercises to manage my anxiety. I also do some form of exercise every day.

Nevertheless I am suffering due to the physical manifestation of whatever disease I have.
If you or anyone else can answer to my questions above, I would greatly appreciate it.
 

ShiftKicker

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I ask you again what the specialists you've visited have said about your test results and clinical exams- they are the people you need to be asking about your symptoms, as they are in a position to provide real help and information. Your questions, which you have had answered in the past, which are answered in the "Read Before" link or have nothing to do with ALS, mean you have been unable to let go of ALS.

Please understand, this forum is for those diagnosed with ALS or their caregivers. It is not here to provide continued care for folks with complex diagnostic needs- it's not something we can do for you here, that is what doctors are for. We are not unsympathetic, just not qualified. This is your third thread and it is clear this forum can not provide you relief from fear of ALS- you must keep working with your doctors.
 

lgelb

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  • Are regurgitation, reflux, stomach pain can be associated with ALS? Not in early disease, generally, but moot as you don't have ALS. In late disease, muscles that control the flow of solids and liquid can be affected, creating digestive issues. Three clean EMGs, no ALS. If you have GERD, treating it will obviously improve your health. GERD is, however, associated with anxiety, stress, and "grab/go" eating, including late at night.
  • Could respiratory onset ALS present in such manner, that perceived weakness would affect multiple muscles at the same time? (Lungs, legs, throat and mouth?) No. And respiratory onset affects muscles that support breathing, not the lungs per se. Respiratory onset is unmistakeable on testing, not insidious.
  • All 4 chambers of my heart expanded vs. 18 months ago. it is just within the normal limits still. I understand heart issues have nothing to do with ALS That is correct. If you are developing mild cardiomyopathy, I would make sure it's being optimally treated, so as to prevent or delay complications.
 
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