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Piedoctor

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First, here is a link to my previous thread here: https://www.alsforums.com/forum/do-i-have-als-als/28732-new-forum.html. I was off the forum for a year, so it closed down.

Quick background - after noticing some symptoms in late 2014/early 2015, I was referred to a neuro and had an EMG done in April 2015. Clean. My wife and I then moved to Kansas, where, after the initial symptoms did not abate and new ones started, I was referred to the KU ALS clinic. I was seen there by the head of the clinic and an EMG performed by the head of the department. Referral was for a bulbar eval, EMG was performed on both arms, and NCV on my right arm and leg. Again, clean and the neuro was unconcerned. Follow-up in May 2016 with now a new department head (old one left), still no concerns. Obviously hugely relieved and moved on.

March of this year I noticed some clumsiness and weakness in my right hand - difficulty holding every day objects, manipulating small tools. I didn't think much of it, but the weakness spread into my biceps and then my left hand in the course of a month as well as a cascade of other symptoms (below). I just went to my new GP (my wife and I have moved again) and he noted bi-lateral thenar weakness (noted in pinch test) and atrophy, as well as weakness in the right biceps and shoulder/back, as well as slight right leg foot drop with some hyper-reflexiveness in the right leg. He also noted fasiculations in my back, arms, calves, thighs, and hands. He had my file and I shared my previous medical history with him, and he has now referred me to the ALS clinic here where we live. I have that appointment in a month. Not entirely sure if that is due to history, exam, or combination.

Given what I have read, it would seem highly improbable for this length of time to have passed from first noticed symptoms, so I had some questions - and obviously my initial fears of ALS are back given his referral.

My second GP (in Kansas) referred my for a bulbar evaluation - given the NOV 15 and MAY 16 exams mainly focused on the limbs, and the NOV 15 EMG/NCV was on the right limbs, could this have been bulbar all along now showing more obviously in the limbs?

Would it be possible for ALS to be sub-clinical from some of the best in the business last year (with an EMG 15 months ago), but now manifesting clinically?

Can age (38) and general fitness (elite athlete) make the early stages of diagnosis more challenging? Again, the neuros at KU in Nov 2015 and May 2016 were not at all concerned.

Can ALS symptoms progress so slowly so as to almost not even be noticeable for almost a year? Almost as if it was dormant.

Finally, over the past three years, my symptoms seem to come on in a cluster with rapid worsening across a number of areas with usually a new area affected, and then stabilize for some time. Has anyone else had that experience?

Thank you all so much for all your time.
 
If by "stabilize for some time," you mean "go away for a while," that's not ALS. Progression continues overall so things only get worse.

The progression that you describe isn't ALS-like, either. And an EMG of limbs and/or thoracic and/or bulbar regions shows neuron damage regardless of where ALS onset was.

I am confused about what bulbar symptoms you think you have had? Also, you report multiple EMGs but no MRI or CT? Have you had any imaging of your brain and/or spine? That would be my first move with any neuro as it is more likely to yield something actionable.

To answer your other question, being young and fit does not change the fundamentals of what neuron damage looks like on an EMG. It might mitigate "clinical weakness" in some respects for a limited time. Not for 3y.

Best,
Laurie
 
Thank you so much for the reply - you replied to me last year as well I believe in my now-closed post. I don't think I'd say go away for a while - more like haven't gone away but also haven't gotten worse or better. Once they start, they stay. Then periodically - seems to be about every 10 months or so, a strange cascade where old symptoms get worse and new ones add in - like the left hand weakness and atrophy.

As for the bulbar - again, not sure. I described my symptoms to my Kansas PCP (not KU neuro) and she referred me to KU for a bulbar evaluation. She and I had not discussed ALS as an option, so when I got to KU and picked up my referral folder and it indicated bulbar ALS evaluation, it was not a good day - until we saw the neuro and she was quite dismissive of that as a possibility.

For some reason, no one has ever suggested an MRI. I have had a c-spine CT done, but it was normal as well. I will see what the new neuro says this time. Moving around as much as we have has not made long-term documentation and continuity with a single care system easy.

Again, I very much appreciate your insights and of course, your time. You have been very kind to me. Thank you.
 
Those with very slow progression can have a kind of step down. I know a couple of people like that. Having had a normal EMG is certainly reassuring though. Please update us after you go to the clinic. Good luck
 
Hi Nikki -

While not what I was hoping to hear, of course, I do appreciate your information. I will try to keep the (now several) clean EMGs in mind as I move forward. I will certainly post an update once I have had a chance to see the doc.

Thank you.
 
The people I mentioned did not have normal EMGs
 
Nikki -

Thanks so much for the reply and my apologies for the delay in my own response. I appreciate you taking the time to pass along some additional information. I had an initial EMG/NCV in May 2015, then a follow-up in November 2015. Both times they noted that I had a normal variation (the famous all ulnar hand on both sides), but otherwise a normal exam (as done by the head of the department at KU). Again, not doubting their findings at the time, but it has been a while and the symptoms have progressed to where this new PCP wants me to do another follow-up with the clinic here.

Again, I so appreciate the information you have provided. I am going to do my best to stay away from the forum until I post an update after my appointment - probably the best thing for my mental health. Too easy to go down the rabbit hole.

Thank you again.
 
Where are they sending you? MCV in Richmond? UVA? When we lived there, I dont believe I knew of a local clinic.

Many diseases have periods of flares and stabilization. Do you notice a pattern....for instance during winter you see things get worse? Anything you can tell the doctors will help. Worse if you exercise, are exposed to cold, get sick, or are badly fatigued? Just some thoughts.

I would ask your doctor what are they thinking? Has anything been ruled out? What is on the table for diagnosis. I would also ask what tests should be done and why.
 
Again, sorry for the delayed response, I have tried my best to stay away from this forum in the time before my appointment (they were able to move it up to tomorrow based on some conflicts I have coming up). There is a local clinic in Virginia Beach now, so I am going there tomorrow.

There has been some pattern to it, and I have been trying to figure out if there are any triggers or what could be causing these symptoms to come on and then progress like they do. According to my notes, it is always most noticeable in February/March where it seems like things start and then marked get worse. Then what I would call a cooling off period where things don't recover once they have started, but either seem to stabilize or at least progress so slowly that they are almost unnoticeable. This is different from the early period, where things seem to get worse by the day.

In the meantime, you are right in terms of questions to ask the doctor. Nothing has been ruled out yet, as I just haven't gotten any real answers. I have my various test results and will take all of those in tomorrow. I will drop a note tomorrow with an update.

Thank you all again.
 
As promised, a quick update. I saw a neuro today who didn't have any explanation for what is going on. Did what I felt like was a very rudimentary and basic exam. Even though my main complaint is clumsiness and weakness in the hands, she did a cursory check - grip only. Tested reflexes in the lower legs, feet, and arms. That was about it. She did not feel an additional EMG at this time would be useful given the two in 2015 (April and November). She then recommended a six month follow-up with the head of the neuro-muscular department. So no answers today and more waiting.

As always, I thank everyone here for their support. I am going to try to stay away as I can for the next few months until that next appointment. Take care everyone.
 
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