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Gretz

Member
Joined
Apr 26, 2018
Messages
10
Reason
Learn about ALS
Country
CA
State
Ontario
City
Belleville
Hello. I would like to start by stating my true admiration for all on this forum. You are all so courageous and inspiring. Thank you for sharing your valued thoughts and perspectives.

I am very worried about having als. Here is my story. I have twitched intermittently for years. In April I started twitching more regularly in all parts of my body with some focal twitching in my left hand just below my little finger. The ADM muscle. I went to my gp and because I was concerned, he referred my to a neurologist. The neuro did a clinical exam and said no weakness, therefore, no als. He would not send me for an emg.

I wanted a second opinion and saw another neurologist who did a clinical exam and an emg on both hands. It was clean.

About this time, 4 weeks into my worry, I began to feel my tongue was weak and my voice was getting soft. My lips did not seem to seal as well but no dripping or leaking. I cough and clear my throat a few minutes after I eat. No choking. Though I don’t slur I feel the words are a bit jumbled at times. Seems like my mouth is a bit slow. No one has mentioned it to me and my family says I sound perfectly normal.

Went to see another neuro. Neuromuscular specialist. Said the clinical exam was totally normal. Good tongue bulk. No Fasciculations, normal strength. Can move it well back and forth though in my mouth it seems less mobile when clearing food from the back of my mouth. This neuro performed an emg on all four limbs, paraspinals and trapezius. He said the neck is dangerous to emg and there really is no reason to based on my clinical exam. Said the trap is innervated partially by the cranial nerve and is a fine alternative to the neck emg.

I have since felt that I have a weakening neck that fits smaller in my dress shirts. In all of my exams with the neuros, neck strength was normal. Very strong in fact. I really feel it is getting smaller. I have a stiff and sore neck over the last three weeks or so.

The last issue but most bothersome to me is that I have developed significant exercise intolerance. I sweat more and my legs feel very wobbly after just riding the bike. I used to be able to ride for 2 hours. Now just 45 minutes and my legs feel very weak and wobbly. My heart rate increases very quickly. No doctor has been able to explain why I have detrained so rapidly in three months. Walking for a half hour is now a work out.

I do have twitching in my chest, stomach, back, legs, arms. I feel like I have lost muscle in my lower back and it seems weaker in my daily movements. I also have developed heat intolerance and sweat more even when not working out. Heard that the autonomic nervous system can be involved but not usually until later in the disease process.

So, over the last three months, many neuro appts and clinical exams. Emg full body, not bulbar. All neuros including a neuromuscular specialist has said no ALS. But my body seems to be saying otherwise. Exercise intolerance, neck atrophy and stiffness, some throat clearing and some perceived speech issues. Fatigue is greater and arms seem weak and stiffer.

Please share your thoughts. I am so convinced that I have ALS. Have read many accounts of the diagnosis process taking time and that it takes time for clear symtoms to present. Also, doctors sometimes miss it because it can be so elusive.

Thank you for your time and thoughts.
 
Gretz, unfortunately, true ALS is not "elusive," as the P/CALS here will sadly testify.

At least two neuros, including a neuromuscular specialist, have found no signs of MND. An EMG was clean (no, it doesn't matter that your bulbar nerves were not tested). No one perceives your speech issues but you. What does that tell you? The same thing we all will. You don't have ALS.

If you have anything, it sounds systemic -- perhaps a virus, adult-onset diabetes, lots of possibilities (including "nothing") so I would follow up with an internist. Meanwhile, reconsidering the age of your mattress, the shape of your pillow, your diet/exercise regimens and sleep could do no harm, along with a delicious fruit smoothie.

I'm not being dismissive of your concerns, but suggesting you channel them to get an answer that will do you some good, instead of an obsession that won't.

Best,
Laurie
 
Hi Laurie. Thank you so much for your reply. You are obviously a very valued and respected member on this forum.
My concern is that perhaps, something was missed in the exams and testing. I really feel that my neck is an area of concern. Could things change in three weeks from my last neuro exam.
Would the paraspinal emg have detected any als related issues in my back if they existed? Also, would the trap emg completed a few weeks ago have id’d issues in my neck.
Thank you again for your time.
 
I also forgot to add that I feel that my facial expression has changed. It is like my left side of my face just under my eye and close to my nose has drooped a little bit. Asymmetric to my right side. The doctors have said my full cranial exam has been totally normal. Does ALS cause facial issues? Does it happen early or later in the process.
Thank you, again.
 
In ALS, the neck doesn't feel stiff or sore at the beginning -- it just droops and can't hold up the head. No one talks about its getting smaller or weaker early, it just loses strength. And I've never heard of that as an onset site, especially not 3 wks after a normal exam.

The face would not change that quickly, if at all. Has anyone noticed this besides you? Are you losing weight? Not sleeping?

A 4-limb EMG + paraspinals + traps is lavish. Many people here were diagnosed on less. It is not as much that where your symptoms are is where they test -- you can see from your own experience that symptoms can be widespread and move around -- but if there are any indications of sensory or motor neuron dysfunction on the test in concert with symptoms (sensory dysfunction points to other disorders, and a clean EMG/NCS clears you of several things, not just ALS). In ALS, there are findings in muscles that there are no symptoms in, by definition.

In your case, there were no positive findings so there is nothing to correlate clinically. Rejoice!
 
Thank you, again, Laurie.
I still have the concern about exercise intolerance. I have read accounts on here that this was the first indication to some that there was an issue. They just didn’t know what at the time.

The other thing I forgot to mention is that I sometimes bite my tongue and occasionally the inside of my mouth.

With regards to sensory issues. With my stiff sore neck, I am concerned that it is because of a weakening neck therefore all the other muscles are compensating this causing pain and stiffness.

Thank you for your input.
 
Hi Gretz. You’re convinced you have ALS, yet extensive EMG testing and exams by multiple neurologists including a neuromuscular specialist have not confirmed your fears. You are very fortunate. At some point, you need to let go of your fears and trust your doctors and EMG results.

Other conditions can cause exercise intolerance, tongue biting, and neck soreness. What do your doctors say about these symptoms?

At the very least, get a good physical exam from your GP/ primary care doc. Have them check your thyroid function and vitamin D level. Make sure you are getting adequate rest and hydration. Physical therapy may also be beneficial.
 
Gretz, couple things.

First,
You don't have ALS. TWO of our most well-informed, knowledgeable, and experienced members explained how they know this.
Plus, doctors have examined you physically with state-of-the-art tests, and told you there's no ALS.
If you still cannot get ALS out of your mind, then that's a separate issue.


Second,
We're really busy, always, with people who have ALS.




My advice:
1. Continue to work with your Primary Medical Doctor to find out what ails you.
2. Don't expect further answers here. You got a great answer: you're going to live.
 
Thank you to all for your thoughtful responses.
I realize that anxiety has gripped me in this. My biggest concerns that continue to be unanswered are the exercise intolerance and my neck that is smaller and stiff.

I have read here examples of folks who found their workouts harder as a first indication something was wrong. I know that they had not had the testing that I have had done so early in the process but getting breathless doing things that were once easy for me is a concern. I did have a pulmonary function test that was normal.
ALS can take a while to diagnose. Is this at all a possibility given all the testing and clinical exams. Thank you for your patience and understanding during a very stressful time for me. I never did say but my age is 47 and I am male. Thank you, again.
 
You.do.not.have.ALS. Full stop. Every test you've had and input from very knowledgeable members based on your description of symptoms attest to that. Please be respectful of the terminally ill members of this forum who have answered your questions. Adding symptoms in response to these answers does nothing to show you have ALS but does show you have anxiety.

I'm sorry for whatever it is you're going through, but this forum covers ALS, not other health issues. Since no one (but you) seems to think you have ALS, it's best to take further concerns to you PCP and report back after all testing is done. No need to before.

I sincerely wish you good luck on your diagnostic journey and hope you find an answer as to what is going on.

Take good care.
 
Thank you. I certainly never intended to be disrespectful in any way. I am simply very worried and I am reaching out for help. I do appreciate your responses.
In your experiences, is an emg a few weeks ago recent enough to rule out new symptoms like my neck concerns hat have presented in the last couple weeks. The emg was in the trap and Paraspinals.
Again I do appreciate your understanding and support.
 
Gretz- I think the issue here is that you are unable to take in what the members here are saying. You apologized and then asked yet again. This indicates an inability to be reassured by folks who have spent a lot of time and effort to provide you information.

Any further posting without visiting with a doctor first will result in this thread being closed.

Please seek help with your anxiety and get proper medical attention. This forum is not the place for you.
 
The answer to your last question is still yes. You do not have to be afraid that the EMG missed something.

As per ShiftKicker's last post, please don't post any further unless you have a doctor's visit to report.
 
Hello again. I met the expectation of seeing a doctor before posting again. See below.

The reason for my original post was due to my anxiety connected to an upcoming neuro appointment. I was sure that they would find an abnormality based on how I was feeling and I needed to get your thoughts on my situation.

I had the appointment yesterday that included another emg and clinical exam. The emg included limbs on my right side. 5 locations in the paraspinals, and the sternocleidomastoid muscle. My tongue has no Fasciculations and the mobility is good. They said my speech was not slurred at all. The emg was clean. Brisk but symmetrical reflexes and they put my mind at ease about my neck with the emg in the neck.

My concern is that both last night and today, I had liquid go down “the wrong tube”. I didn’t really choke, but coughed. Is it possible that bulbar issues were missed yesterday at the appointment. They asked if I had ever had any issues with swallowing and I told them about clearing my throat. I had not had any issue with liquids until after the appointment.

Is the emg in the neck enough to rule out bulbar. I am worried that I did not have the chance to tell the doctor about the new issue with liquid. They said no als yesterday but I feel the landscape has changed a bit now.

Your thoughts are appreciated. Thank you all.
 
Yes, the neck EMG would show any abnormalities in those muscles, which include swallowing.

The fact that you had those perceived issues for the first time after the test is pretty classic for "mind over matter." You're clear. Take smaller sips if it helps. Go and live your life.
 
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