40m Concerns

jmiah

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Hello all,

I am humbled by your graciousness and service to the anxious folks out there with strange symptoms. I hesitated on posting for weeks, but here we are.

I am 40m with a fairly long history of chronic lymphocytic leukemia (never treated) and some other ailments from my military service in Iraq. I started having symptoms that were concerning in the beginning of August of this year, but possibly started a year ago or so.

I had a one night stay in a hospital which was cancer related and they treated me for high potassium which ended up being a falsely high reading. Long story. I was sent home the next day and that's when the troubles started.

It began with a vibration like sensation in the abdomen which I chalked up to the med they gave me for the potassium (kayalexelate). Nonetheless, it impacted my sleep and I had a few relatively sleepless nights in a row. Then started the twitching. First in the legs, then basically migrating all around. I experienced significant weakness in the calves at that time as well as the hands and forearms.

Fortunately I already had a Neuro apt with a NP scheduled and she did a clinical exam on me and found no issues despite the complaints of fasciculations. Ironically, I had an EMG done in May for other (I thought non related) Neuro issues related to neuropathy. It was clean but a couple of months prior to all of this. Neuro NP noted it would be highly unlikely to have that clean EMG (carpal tunnel right hand) and then just a few months later develop these symptoms and have them be ALS.

As the weeks went by my symptoms worsened. The weakness was clear in arms and legs especially. I started to drop things more. I was running into the edges of doorways and just clumsier than usual. Then I started to have tongue and mouth issues. It started with biting my tongue when saying certain sounds. I'm a mental health therapist so I talk a lot and it was obvious to me but not to anyone else. It had persisted and I have begun biting my cheeks inadvertently when just opening and closing my mouth. Dentist doesn't see any anatomical issue. I bit my tongue in my sleep for the first time ever recently. Fasciculations and weakness persist and I have clearly lost significant muscle on my hands, firearms, and lower legs and feet. Wife notices too. It's noticable on pictures from a year ago how different my hands are.

As far as the mouth issues, I do have some large tonsils and sleep apnea untreated so I'm hoping that's the issue with my mouth. But a little ironic with the other symptom on top of it.

I have a second EMG scheduled for November 3 and a spinal tap for next week. Labs and imaging done within the last year are all clear, including MRI in Dec of 2020.

I will add that I had a bad run of viral illnesses for about 2 months prior to all of this starting and even tested positive for parainfluenza in the hospital.

Thank you all for your time and I wish everyone well.

Jeremy
 

Nikki J

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As your np said your recent normal emg is very reassuring. I will also note that post viral syndromes can have many neurologic features and have brought many people here. It would be a highly aggressive form of ALS to give you head to toe symptoms in 2 months so if your tests and clinical exams don’t clearly show ALS I hope you will be reassured

let us know what happens. Good luck
 

lgelb

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Potassium has to be balanced against magnesium, calcium, sodium. It is worth reconsidering and maybe documenting your diet against a symptom diary. I am not clear if you are now being treated for the CLL, but of course that has its own side effects. Large tonsils and sleep apnea would mean that your sleep is not as refreshing as it could be, which certainly affects how you feel/how well your muscles work all day.

As Nikki says, there is really no reason to think of ALS.

Best,
Laurie
 

jmiah

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I'm hoping you're both right. Not sure as this has been perplexing and consuming. Thanks for your time. No treatment for the CLL yet and all the symptoms started after viral illnesses and treatment for erroneous potassium values. All lab values have been good except the usual white count issues with CLL. I'll post back when I know more.
 

Nikki J

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As I said your tests will give you an answer. Your lp may give helpful information and that is next week
 

affected

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I can see why you are perplexed and concerned with what has been happening. We have never seen ALS start this way, so that is one thing you can remove from your worries.
 

jmiah

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I am starting to think there is not much option besides ALS or other MND here. So far, my CSF testing has proven unfruitful, with the exception of >5 identical oligoclonal bands in CSF and serum. This points to a systemic issue. Autoantibody panel sent to Mayo was all negative. All other values were relatively normal. I have a call out to the Neuro team for some help interpreting the results.

I think my only last hope seems to be paraneoplastic or something similar, though I'm not sure that was tested for and I'm not sure it fits all of my symptoms. Could be that the oligoclonal bands are incidental or related to my CLL and that it has nothing to do with my symptoms.

My weakness in hands and feet have worsened. Same with facial muscles, mouth, and speaking. Atrophy is undeniable and seemingly worsening. I'm trying hard to hope for something that can be treated but I'm having trouble seeing it at the moment. EMG is Nov 3rd. I call frequently to get a sooner apt but nothing sooner so far. And I still can't seem to get an apt with an actual doctor instead of the NP. No offense to NP's.
 

Bestfriends14

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ALS doesn't start the way you are describing nor does atrophy happen at the lightening speed as you are saying. November 3rd is not far away at all. After you get your EMG results, please share the good news that you have been cleared of ALS (which you will). Until then, get outside, walk, and find something to be grateful for each day. Post back your results after your EMG.

Until then...
 

affected

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I think you need to just sit tight til the EMG.
How many times have you fallen? It is important to look at using maybe a wheelie walker to stay safe. Or are you already in a wheelchair?

You seem quite convinced, so spend a couple of weeks just looking after yourself, but please be ready to accept that a second clean EMG will end this line of fear.
Until then, I wish you the best, but we can't add anything more. Please post the results however as it really is helpful.
 

jmiah

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Not much else I can do besides sit tight. Unfortunately sitting tight has only resulted in loss of abilities, weakness, and worsening symptoms. I'm not convinced of anything in particular. I am open to any possibility. That said, if this is going to be something treatable, we are running out of time to do so before all of this is irreversible or worse. Because it sure doesn't seem to be stopping or slowing down on its own.

At this point it's either ALS, an odd variant, or something even more rare.. with perhaps the one caveat of paraneoplastic as a possibility (not exactly the best outcome but possibly treatable).

It sure isn't anxiety or stress, I can tell you that. I've been a therapist for a long time and I see my own psychologist as well. I understand how stress can impact things. I'll be glad to report back what the next round of tests show.

I want to be clear, I'm not talking about feeling off here. I'm talking about legit changes in how my body functions. It's been noticeable for the last 2+ months but maybe it's slowly been going on for longer and I didn't notice before the fasciculations tipped me off. This is most easily notable in my feet and hands, but also my forearms and calves. When you live with cancer as long as I have, you kind of learn to ignore things and, as you say, be grateful.

Now, it's simply not deniable. I have way less strength in certain muscles. And bones are way more visible without a big loss of weight. Songs I could play on guitar last month I cannot, without quite a lot of fumbling around and muscle failure.

Anyway, I've taken up enough time. I am happy to report back. All the best.
 

affected

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You need to take this conversation back to your doctor.
You don't report any failing, but please don't feel the need to reply on that, see your doctor if you have such big concerns that is where you should be getting them addressed.
 
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