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Sushimann

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Learn about ALS
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New Brunswick
Hello,

I'm a 43 year old male that started twitching in 1999. I saw a couple of Neuros back then and had an EMG that was clean. Diagnosis was simply benign fasiculations.

Fast forward to late 2013, my voice started to have this weird vibration/rattle at the end of a sentence that occurred randomly a few times. Around this time I also had this involuntary swallow/spasm in my throat that would only occur in the early mornings when I was half awake lying in bed. At Thanksgiving there was a bowl of gravy and couldn't think of the word gravy - this was startling at the time.

Starting in January of this year, the following symptoms began occurring:

- Increase of twitching in face and body
- body shaking when doing push ups
- need to clear throat after every meal, sometimes when talking
- decrease in muscle mass in arms shoulders and chest
- drop things more frequently
- arms fatigue quickly
- occasional liquids going down wrong pipe
- cognitive issues such as forgetfulness, saying words in wrong order
- loss of strength at gym, 15lbs feels like 30lbs
- developed major depression
- shortness of breath when speaking
- stuttering more frequently
- jaw fatigue when chewing
- bite lip,tongue, cheek more frequently
- voice volume was soft and barely audible when speaking a few times


I've seen 4 Neurologists, Pulmonologist , Speech Therapist since February.

Lung function test in March was normal.

Modified Barium Swallow in March was normal.

Neuro 1 was horrible - he barely examined me and said No ALS.

Neuro 2 was well regarded, did a physical exam that he said was normal. He would not do an EMG for me calling it a waste.

Neuro 3 was a colleague of Neuro 2 who I saw in March. He agreed to perform an EMG of my right leg and arm that was clean. I pushed him to do my tongue/chin due to my bulbar symptoms but he wouldn't because he lacked experience with the tongue.

Neuro 4 was an ALS specialist at an accredited ALS center in NYC in April. On physical exam he noticed right sided facial weakness. He performed an emg of right leg, buttock, parapspinals, right arm and tongue. Pinched nerve found in right elbow and the rest was clean. Diagnosis BFS.

Apparently the facial weakness is something I have had for at least a few years as the Neuro saw it on my driver's license. He wanted me to get an MRI to make sure there was no lesion. The MRI showed a few dots in my left frontal lobe that aren't linked linked to anything specific.

The ALS Neuro believes I was born with the facial weakness but I don't agree. I believe I acquired it. I called him to ask if he would do another EMG on my face and he wouldn't. He said "There is 0 percent chance you have ALS. Absolutely no chance whatsoever". I asked if I was an atypical, slow moving bulbar case and he said "bulbar almost always starts with slurring which you don't have and we even checked your tongue and it was normal".

I feel like I have an atypical case of bulbar ALS and the start of frontal lobe dementia. I went back to Neuro #2 who specializes in dementia and all he did was ask about my symptoms and say I have somatization. He was very dismissive.

On top of this, nobody in my family thinks this is happening due to the fact that I saw 4 Neuros and have the normal Pulmonary and Swallow test. I am prone to anxiety so my family believes my symptoms are a result of it or somatization of my mind playing tricks. "All those neuros can't miss ALS"

I almost lost my wife of 16 years due to my anxiety over my belief I have bulbar ALS and dementia and all the doctors visits. I was and am distraught about the thought of my kids having this condition since it would not be sporadic ALS. My 9 year old son's muscles shake when he is nervous just like mine do. I feel overwhelmed with guilt since I had read there were no cases of BFS turning into ALS before making the decision to have children.

Should I see another ALS specialist for an EMG of my face ? If I am correct and acquired the facial weakness does that mean ALS is likely based on my other symptoms ?

Sorry for the long post, just wanted to share my history. Thank you for your time!
 

codyclan

Distinguished member
Joined
Jan 26, 2014
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Round Hill
Oh my goodness. I am so sorry for what you are going through, but these are not ALS symptoms. Four neuros have told as much--four! That's quite a few and they all agree. For reference, my husband had bulbar onset ALS and saw two neurologists--one who diagnosed him and one who confirmed with a second opinion, and he never had an EMG of the tongue or face, even though he was bulbar onset. A neurologist who specializes in ALS is not going to miss weakness associated with ALS, really. But I don't think what we say on this forum is going to help you or ease your anxiety about this if four actual neurologists can't.

So, I offer this, treat the most prominent symptom right now, which is your anxiety. Treat your anxiety and see what symptoms are left and then work with your GP to go from there. I am very happy to say that this is not the place for you.
Best wishes,
Tracy
 

ShiftKicker

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Mar 16, 2015
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06/2015
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CA
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BC
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Vancouver
With your symptoms being with you for almost 20 years, ALS is not on the table. You would have been profoundly physically impaired by now. That is not to say you don't have something. However, what that might be is not something strangers on the internet can really help you with. 4 neurologists and 2 decades say "No ALS".

You need some proper counseling and support. This has affected you for years. This is not a dismissing "anxiety" statement, despite what you might think. Whether you have something neurological or otherwise, or whether it is straight up anxiety, you need to see someone who can help you find some coping skills. Your concern over your own symptoms has affected your family relationships and is also causing you to scrutinize your childrens' movements too. This is a major problem, as this is something that will last a lifetime for your kids and affect their own relationships, future choices and how they interact with the rest of the world. Friend, you need some tools to help you navigate this in a more "healthy" way and it is urgent you do so as quickly as possible.

A psychiatrist (not psychologist or counselor) who specializes in somatoform disorders or complex chronic and long term diseases can help you in a few ways. First, they can be a medical resource that can help you weed out "anxiety" and detect potential disease related symptoms. They can also provide you coping skills and support as you pursue causes for symptoms. A psychiatrist can help with care coordination, provide referrals to other specialists and look at potential cognition issues (which you complained about- dementia, etc). They are uniquely situated to track such changes over time, assess any current medications, prescribe medications (how you respond to meds provides huge clues to certain conditions) and provide tools to you so your children are not as affected by your fears. This is important- get the psychological help and support now. If you DO have dementia, a psych will detect it before anyone else and it could help provide clues as to what, or if, you have something unique going on.

Best of luck. Sounds like you've been looking for a long time.
 

Sushimann

New member
Joined
May 22, 2018
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Learn about ALS
Country
US
State
NJ
City
New Brunswick
Thank you for the prompt responses Cody and Shiftkicker. I appreciate your advice and reassurance.

I began seeing a Psychiatrist in March specializing in Health Anxiety from the urging of my family. He started me on Lexapro and I have begun feeling better mentally.

My symptoms are still there, however I am functioning better and have repaired my realitionship with my wife. For the time being I have stopped going to doctors searching for answers as it was consuming me and having a detrimental effect on my family and life.
 
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