A humble request for your insight.......

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bjamison01

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Hello all,

I want to first take the time to thank those of you that contribute to this forum and assist others like myself who have ALS related concerns. Its a blessing to have you all as a resource, good news or bad, to assist those of us going through challenging health concerns. Your insight and feedback as to my current situation would be greatly appreciated. And let me apologize in advance for the length of this posting. I desperately tried to be concise, but failed miserably.

A little about myself, I'm a 45 year old, happily married father of 2 children (11 and 8 years old). While I am admittedly OCD by nature and am prone to high anxiety in stressful situations, I have, up unto this been blessed with good health. I have never posted a personal health issue to a forum before. However, in the last couple months, I have rapidly developed a variety symptoms that has led significant stress and anxiety in my life; I no longer feel like I have a handle on what symptoms could be stressed induced, and what could be possibly something larger such as ALS.

Before I list my symptoms, I would also like to mention that I did read the "Read Before Posting" articles at the top of the forum. The posts were very helpful, and did leave me inclined (or wishing) to believe that I do not have early symptoms of ALS. Nevertheless, I would be grateful for your feedback.

The somewhat short version of my symptoms:
In mid-september of 2019, I experienced minor swallowing issues with food (getting suck) that went away but resurfaced to a far more significant degree in mid-December. I subsequently underwent a CT scan of my throat and my chest, followed by an endoscopy that has, thankfully appeared to have ruled out cancer. I was advised that the swallowing issues were likely the result of "silent reflux" and was advised to take prilosec for 2 months. The experience caused me extraordinary anxiety and stress as I was convinced that I had throat cancer. During december I dropped about 7 pounds in weight going from 208 to approximately 201lbs. (6'4" tall). Though the anxiety and stress did seem to go away after throat cancer was ruled out.

In early January 2020, my swallowing issues began to surface again, though still not as bad as in December. I have subsequently developed sleeping issues where for the past few weeks I have regularly woken up each evening at about 1-2am with night sweats and have been unable to go back sleep. I'm likely averaging 3-4 hours sleep a night despite being prescribed ativan first and then ambien, neither of which is working.

If you're read up unto this point than your probably wondering why I'm even bothering to post here. Nothing I've said so far likely points to ALS. Here's where it gets extraordinarily scary for me.

* Shortly after the sleeping issues I began to develop fatigue in my both my legs. There were days in the middle of January where the fatigue seemed to subside, but that fatigue is now prevalent and ongoing on a daily basis. Every morning, my legs feel like they ran a marathon the day before. In the last two weeks, my calves, feet, and to a lesser degree my mid-back, have developed an off and on burning sensation (think feet on fire) to the extent that I often cannot place my legs under the covers when I sleep at night.

* Approximately 2 weeks ago I noticed fatigue in my left arm in addition to my legs. Shortly thereafter, I have experienced and continue to experience random twitching throughout my body primarily in my left bicep but also in my calves and thighs. The twitching in my bicep occurs frequently (every 10 minutes to an hour) during the day and night, the twitching in my calves/legs are primarily noticed in the evening and while sleeping. As a result of these symptoms my primary doctor ordered a CT scan of my head which did come back clear.

* Beginning last weekend (2/1/20), the muscle fatigue has now spread to my right arm, both my hands (feels tight and cramped), and to a much lesser degree my jaw. There is a noticeable fatigue in my jaw muscles when chewing.

Every day it feels like the fatigue and twitching is getting slightly worse, though I have yet to experience any clinical weakness as explained in the "read before posting" post. I have no doubt that lack of sleep and stress associated with my health anxiety has contributed to these symptoms, but I'm struggling to believe that stress and sleep loss could manifest to such a physical degree. I do have an appointment with a neurologist on Monday, but I'd welcome your feedback in advance.

Thank you,
 

KarenNWendyn

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I’m glad you read the sticky.

Feeling weak and fatigue in your muscles is not how ALS starts. The first sign of ALS most often is realizing something isn’t working right which leads to inability to perform a task (failure). This is described in the sticky. In the bulbar region, the first sign tends to be slurred speech that others notice. Someone with ALS who notices failure will have weakness on exam. This is different than perceived weakness.

Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. It doesn’t matter how much you twitch or how often or where.
Your symptoms are consistent with health anxiety. Drugs like Ativan help with panic attacks, but SSRI medications are better for long term maintenance therapy of anxiety. Please see your doctor about this because your anxiety is ruining your life.
 

lgelb

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+1
Also, both Ativan and Ambien can lead to fatigue or make it worse, and can also disrupt sleep cycles, which likewise can affect twitching, etc.

SSRIs can, too, so if you go that route, I'd ask about a more sedating one like paroxetine. Low-dose trazodone or mirtazapine are also options. But ultimately, you want to treat the root cause, which suggests counseling for your OCD-like anxiety, or whatever underlies it, could be helpful.

Night sweats suggest your sleep environment could be improved, if you do not have a systemic disease (that will not be ALS). Be careful of eating and screen time before bed.

Best,
Laurie
 

bjamison01

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Karen and Laurie - Thank you both so much for your replies. I am truly grateful for your thoughts and insight.
 

bjamison01

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Hello Karen, Laurie, and als forums community,

I am sorry to resurrect this thread as I know I have already received responses from community members who are all too generous with their time and are willing to help those like myself that are struggling with unforeseen, health-related curve balls in life (its spring training so why not a baseball reference) that I am trying to resolve or at least understand.

I wanted to provide a brief update of my status and see if there was any additional insights that community might have. As mentioned previously, I do not have any previous history of posting health related issues to this or any other internet forum, so when I do post this, please understand that I do not take your time or opinions lightly.

Since our communications in early February, I did see a general neurologist who performed a clinical exam and found me entirely unremarkable; so much so that he recommended waiting 30 days before proceeding with any tests as he thought it would be "a waste of money." In hindsight, I wish I had asked to proceed with an EMG, but at the time, my wife and I both were grateful to hear the doctor's opinion. I also met with an ENT who could not find any signs of GERD or acid reflux. He also ran a full autoimmune panel and had me do a barium swallow test all of which came back negative. He recommended I follow up with a neurologist.

Unfortunately my condition has not improved in the slightest since my previous posting and my neurologist appointment. My symptoms are:
1) Swallowing/nasal - no problems with liquids but I continue to have difficulty with solids getting stuck in the back of my throat. They can be pushed through with a few swallows, additional food or liquids. I am experiencing some congestion along with throat clearing, which makes me raspy on occasion (never really had allergies bu who knows). No noticeable tongue weakness or slurring of words to date. No noticeable voice changes (I keep asking my wife) or volume challenges.
2) Body stiffness - My legs, arms, back, and neck are constantly sore with minor pain (2/3 out of 10). Always feels like I ran a marathon the day before; stretching and movement does help to loosen things a bit. Vigorous activity is rewarded with burning sensations.
3) Twitching/fasciculations - consistently in left bicep (ever 5-10 minutes) and a slight twitch in my legs every 1-2 hours.
4) Sensory issues - I still get minor burning sensations in my legs and feet, but nearly as bad. My night sweats are largely gone, with the exception to waking up to sweaty legs on occasion.

Understanding that ALS presents differently for everyone, I'm struggling with the totality of these symptoms. I know it has been repeatedly stated that Bulbar generally presents with slurred speech, but I'm concerned that I may be the exception to that statement. Does anyone have knowledge or know if difficulty swallowing could be a presenting symptom?

Also, I have read in a couple medical journals that if diagnosed with bulbar onset, limb progression generally averages 12 months. While I still do not believe I have signs of clinical weakness, I have stiffness/soreness throughout my body that seemed to come on within a little over 90 days from my initial bulbar symptoms (legs first, then left arm, then right). This seems incredibly fast.....?

As mentioned, I'm trying to make sense of all this. Any additional insight you may have would be greatly appreciated. I do have an appointment with a neruomuscular specialist this Thursday.

Thank you again....
 

KarenNWendyn

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You’re not describing ALS at all. I seriously wouldn’t be worried. Since you’re seeing a neuromuscular specialist this week, I suggest you save all your questions for that visit.
 

Nikki J

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hi
you are still not describing ALS- including your swallowing symptom

i expect your appointment on Thursday will go similarly to your other neuro visit. Apparently you feel you need an emg for reassurance. If offered before scheduling consider:
will you believe it ? Will you say too soon, wrong muscles, poor technique?
what if it has a minor abnormality? These are common Will you accept what the interpretation is?

do let us know what the doctor says
 

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Hi - I have to say that you are still basically where you were when you saw this doctor:
" I did see a general neurologist who performed a clinical exam and found me entirely unremarkable"

everything is so vague that you can't call it progression. I so agree with Nikki - if you have an EMG I wonder if you would even believe it or start questioning the competence of the doctors or wondering if it was done too soon.

Please, see your doctor and follow their advice on what is next, don't keep asking if you have ALS.

All the very best.
 

bjamison01

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Hello Karen, Niki and Tillie,

Thank you for taking the time to provide me your feedback and thoughts. Your questions really resonated with me and are certainly fair. However, I can assure you of two things:
1) I have never had health anxiety before - my fears are symptom driven; and,
2) just as my previous CT scans helped me rule out cancer as a potential cause of my ailments, I would hope that an EMG would help me rule out ALS. Though at the end of the day, an EMG is less important to me than simply finding a diagnosis, and hopefully a solution.

I think I should make clear that it's not my intention to be dismissive of my doctors and their expertise, nor of you and your opinions. Rather, I am desperately in search of answers and an explanation as to why I feel the way I do. I can't move my head, arms, legs or neck without being reminded every day and with every movement that something is seriously wrong with my body.... it just may not be ALS, for which I would be grateful.

Again, thank you so much for your valued feedback.
 

Nikki J

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Fair enough. It is hard to feel something wrong and not know why. Approach your visit with that question- what is wrong with me? rather than is this ALS?

let us know what happens
 

lgelb

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A systemic disease continues the most likely explanation, if anything, so after you get the EMG for reassurance, please find/return to a good internist who can refer you if/as needed to an endocrinologist or rheumatologist.

Secondly, you say that your anxiety is symptom-driven, but you went from a sticky throat to throat cancer concerns, acknowledge OCD tendencies, etc. And if you're not getting enough sleep, everything you describe will only feed on itself. Thus, if you are honest with yourself, you might see a need for counseling at this point, even if to re-evaluate the need/desirability of Ativan and Ambien and strategies for improving sleep.
 
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