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anitadeanne

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So I am very scared... It was last year this month I started experiencing neurological symptoms. They only lasted a few days and returned January 5th to be exact. I went to the hospital because my mouth was going off in shocks and my whole body went numb and tingling after I saw my massage therapist. I saw a neurologist and he was running tests on me for MS. My MRI came back normal. I would go through spurts of a lot of pain. my legs felt like I was running a marathon for days and anything in my hands felt extremely heavy. Then suddenly it would stop then come back again. Doctors tell me I need to go to the gym because they think I may be out of shape. However I do not have the strength I use to and that is why I do not go. I had an EMG and Nerve Conduction test on my arms and legs in April. Everything appeared normal. Throughout the summer the pain I felt in my arms and legs went away however my twitching got worse and since then is all over my body including within the last few weeks my face. When I wake up in the morning the first thing I feel is my twitching.

Now that winter is coming and it is getting a lot colder my body aches and my muscles feel stiff. Every morning I wake up I do not know how to describe it but rather feeling drunk. Then throughout the day I regain my strength. The thought of possibly having ALS stopped crossing my mind within the last few months until this past Friday. I have been having trouble swallowing for awhile. I would say 3 years but it got worse last winter along with most recently. Food sometimes sits at the top of my tongue that I have to scrape off. I had a gastroscope Friday and because of the results I am back in fear. He said that my swallowing muscles appear "sloppy". He then proceeded to ask me if I had been experiencing neurological symptoms (since I was there for trouble swallowing and stomach issues). He then said that this is neuromuscular related and would be testing me for Myasthenia Gravis. However when he said that he was not aware of my past symptoms. Since this appointment I noticed my mouth tremors when I try to open it. I am very scared. It seems as if I am just a few steps away at this point from a diagnosis.
 
I am happy to tell you in my humble -- and non-professional opinion -- that nothing you have described is similar to ALS. I do, however, see some Myasthenia Gravis-type symptoms, particularly in relationship to your variable and fatiguable weakness. More importantly, a clean EMG rules out ALS.

I'd suggest reading the stickies at the top of the DO I HAVE ALS? IS THIS ALS?

https://www.alsforums.com/forum/do-i-have-als-als/26591-new-members-please-read-before-posting.html

All the best in your future.
 
The bulk of your symptoms appear to be pain and sensory issues. If you'll read the sticky titled PLEASE READ BEFORE POSTING you'll see that pain is not associated with the onset of ALS.

Additionally, a clean EMG means no ALS.
 
Not the words I wanted to see on my report today after my Gastroscope.... One year of symptoms. An EMG/ Nerve Conduction Test and a Neurologist that wrote me off...

Final Impression: Essentially unremarkable endoscopy suggesting that her symptoms are neuromuscular in nature. I think this warrants a 2nd opinion from another neurologist to rule out neuromuscular disease such as Myasthenia Gravis and ALS.

I cannot cope...
 
"Warrants a second opinion to rule out MG or ALS " is miles from "you have ALS". Get another neuro opinion and see what happens
 
I am so very sorry Nikki that you had to experience it with 6 family members and yourself. I think I am just scared because I went through it all for the last year. I have been tested for so much... MS, Fibro, Arthritis etc... I had a nerve conduction test on my arms and legs however based on this information most of my concern is in my mouth. It is just really frightening. Thank you for your feedback. I appreciate it.
 
I understand you are scared but truly jumping to ALS as your focus is not helping you. Neurological work ups can be lengthy and there can be many twists and turns. Hope you get an appointment soon
 
I understand you are scared but truly jumping to ALS as your focus is not helping you. Neurological work ups can be lengthy and there can be many twists and turns. Hope you get an appointment soon

No truer words!
 
I have been to ER 3 times in 24 hours. I could feel my epiglottis touching the back of my throat on Friday night. Last night I felt something in the back of my throat. I stuck my finger down there to feel what it was and you can feel a narrowing of my epiglottis and there is a huge piece of flap just sitting there. I had an xray done and 3 doctors looked down there and saw nothing. I cannot cope anymore. It is touching the roof of my mouth. I feel so hopeless as no one has been able to help me. My voice is shot as of yesterday from crying so much. I have been terrified to sleep because I am so scared it is going to move and obstruct my airway while I am sleeping. I feel so helpless. What is going on ?
 
I'm so sorry honey, you are in a dark place.

I truly suggest psychological help. Don't stick your fingers down your throat either.

We can't do anything to help. We truly have our hands full here supporting those who are dying and caring for the dying, our time and energy are completely used on this.

All the very best, whatever is going on with you is NOT ALS, NO WAY, and is treatable once they pin it down.
 
After multiple visits to the ER finally had a barium swallow test done which confirmed my epiglottis is curled sitting at the base of my tongue. I did feel a piece of cartilage back there. They are doing another barium swallow with food. I have an appointment with my neurologist to inform him of what is going on, and how I can barely eat now without food getting stuck. I also have an appointment with an ENT next week as well. I am beyond terrified. One year of neurological symptoms, widespread twitching, tremors, 2-3 years of change in breathing and difficulty swallowing (now a lot worse). Doctors think anxiety, however I am sorry anxiety does not cause this with my epiglottis. I have lost 5 pounds in 6 days because I can barely eat and it takes me a lot longer. How the heck did this all happen so quickly? :/
 
Doctors think anxiety,

This is not a good place for you. Doctors do know all the things anxiety can do to a person, they are really smart people who are highly trained. Yep they can be wrong, so second opinions are really good ideas.

You still have no ALS symptoms, but your anxiety is increasing and the physical symptoms typical of anxiety are increasing at the same rate. Anxiety causes swallowing issues for sure.
 
Anita the rapid progression of symptoms spiralling up like this is not how ALS works. What the underlying physiological issues are is very unclear. Without a doubt anxiety is a part of this. Try to get control of this. It is going to be very hard for your doctors to figure it out if you do not. You really have leapt a number of bridges here not just ALS but FALS. I don't know what your answer will be but at this point in your journey it is wise to take a big step back from ALS sites. I have seen the posts on FB. You do realize those people answering you think you are from a confirmed FALS family and some even think you are diagnosed? This is coloring their responses to you and unfortunately feeding your certainty this is ALS
 
I have noticed a new symptoms that is very concerning to me among others. However I just wanted to address this one. The back of my tongue on the right side has flattened. When I push my tongue down on the floor of my mouth there is this large gap between my tongue and the side of my tongue. The base of the right side is now flat. Is this considered atrophy? It is just on my right side. My speech is normal. I've had swallowing issues off and on. 1st barium swallow showed residue the second with food was normal. However they noted I was chewing a lot. I see my ENT again on Wednesday to address this. I also see my neurologist next week. This symptom definitely has me alarmed...
 
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