Old 09-13-2017, 03:50 AM #1 (permalink)
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Question Worried regarding new symptoms and test results

Dear All,

I had been on here in 2014 with some complaints about twitching and muscle weakness, over the past 3 years it has stayed with me and gotten worse to some extent. I have been to many doctors and Neuro's and had 3 EMG, last was early last year on my limbs but doctors didn't pick up anything abnormal at the time.

Also ive been tested for Autoimmune disorders and MRI and all came back negative, so there is no diagnosis as yet, recently i had my MG blood work redone as well which came back normal.

However over the past month my symptoms got worse, i am having swallowing issues and left hand and arm weakness, also sporadic twitching, its worse on my left side and left arm, my left thumb and index finger feel tired as well my my wrist all the way to my elbow, even when i shower my arm gets tired and i need to rest it, it feels kind of clumsy and weak, there is also a bit of pain and discomfort all over my arm and my hand, when i use my hand a bit like when typing or holding something it hurts and feels tight a bit and i need to rest it ,

overall the power is still there but fatigue easily, even with my legs and especially my right leg and thigh, anyways i went to some specialist who checked my swallowing and did some test for contractions and said that my swallow was ok but a bit weak contraction at the middle near the Esophagus and had pressure build up from below he couldn't explain why, he basically said its not normal but it can happen to older people and can also be found sometimes in some younger people as well.

They also did the barium swallow study which showed ok swallowing but decreased motility of esophagus especially during during abdominal pressure, they couldn't come with up a diagnoses and sent me to a heart specialist since they said the pressure might be coming from there, the results came out fine.

Im stuck in limbo since they said it could be something small or it could be the start of some kind of MND, also my jaw and tongue feel weak and tired sometimes and i have trouble speaking but its not noticeable to others, the tongue recovers after some rest and the jaw has good and bad days. somedays its even hard to chew rice and somedays no issues, liquids are usually ok as long as i drink slowly but i haven't had any chocking attacks as yet, i do get pain and pressure on the sides of my jaw and a feeling of numbness as well when i move my jaw after eating.

Could this be ALS creeping up on me ?
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Old 09-13-2017, 01:30 PM #2 (permalink)
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Default Re: Worried regarding new symptoms and test results

Ozcar, anything is possible but it would be a very slow-progressing MND and the three normal EMGs don't fit, either. Wondering if anyone has considered a muscle biopsy? What you describe seems as much like a myopathy than a neuropathy.
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Old 09-13-2017, 10:38 PM #3 (permalink)
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Default Re: Worried regarding new symptoms and test results

Thanks for the reply Igelb, well over the past 3 years i have seen numerous doctors and they all pretty much do the same things, they check my strength and say its good, they check my reflexes and didn’t mention anything is abnormal, they check my mouth and say my tongue looks ok and doesn’t seem weak, they make me blow out my cheeks out and check and say its fine, my speech doesn’t seem affected and by looking at me they don’t see any proper evidence of atrophy. My bebinski is normal as well since when ever they checked they never mentioned anything wrong and i have even checked my Hoffman reflex recently and didn’t see the fingers invert inwards.

None of these doctors, including the ones that did the EMG’s from which one of the doctors is considered in the top nuero muscular doctors of the country have ever asked me to do a muscle biopsy, maybe from their findings they don’t think anything is pointing in that direction since they have done numerous blood work as well. However they always leave the maybe part open, maybe you have it , maybe you don’t but we don’t see anything unusual yet.

However this past month has been hard for me, I have had such episodes on and off in the past 3 years but this one is especially bad, my left hand feels really drained out and constant discomfort running through it especially around my wrist and bicep, and my hand feels tight, apart from that my jaw feels weird, get some degree of pain as well as a feeling of numbness ( it can even be described like when something is swollen or injured) so that kind of makes me feel like I don’t want to chew much, and then comes the swallowing issues which I already explained earlier and the results.

Im only 34 years old so I think a lot of times the doctors feel I don’t fit the profile of someone with a MND so maybe they’re not taking me seriously anymore and with the EMG’s they didn’t find any evidence, only found a ulnar nerve issue on my left hand which is the same hand bothering me at the moment.

Unfortunately all this is a taking a toll on my life now, since my work is being affected and I cant focus or keep up with the pace, also taking time of to go see the doctors is an issue, my family doesn’t believe me anymore and think its all in my head and my wife is drained out by all the test and maybes and no diagnosis, if anyone has gone thru something similar and maybe gotten a diagnoses or found that it was something else in a different direction please let me know as well, I am literally at the verge of having a break down now.

Thanks for listening and awaiting your replies
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Old 09-13-2017, 11:12 PM #4 (permalink)
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Default Re: Worried regarding new symptoms and test results

As someone who seems to have a slow progression I feel the need to jump in. At no time in a 3 year diagnostic process did I ever have a normal test, clinically or electrical diagnostic. No one ever said I don't see anything wrong. I was asked a lot about pain and other sensory symptoms, which I don't have, which would point away from ALS. You seem to be fixated on something that isn't there. Have you explored anything in the way of being treated for anxiety? It is nothing to be ashamed of and can have a serious impact on your life. It may not be the ultimate answer, but definitely worth a look

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Old 09-14-2017, 12:02 AM #5 (permalink)
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Default Re: Worried regarding new symptoms and test results

Thanks alot for your answer Vincent, i honestly really appreciate it, i am fully aware of the anxiety issues and no doubt i have those but to be very honest most of my life i was very strong minded and never had any issues, i didn't even know what ALS was until 3 years ago i went to the first neuro and when i mentioned my symptoms he used the word ALS and said some of the symptoms sound like that, today i understand it was very unprofessional of him and thats why i never saw him again after that, most of the doctors ive been to after that did their job professionally and have never suggested that i have evidence of a MND, but i do understand that life itself is never 100% due to which they have to always leave the " Maybe " even though they are sure of something and if fate has that kind of thing awaiting you its impossible to stop it.

Thats basically where my downward spiral started and things kept getting worse, i am considering visiting a Psychiatrist to help discuss these issues as the stress levels are more than i could ever imagine with other problems at work and at home.

I do believe i might have some health issues as my Inflammation levels are always a bit on the high side in my body and my MRI of spine a few years ago showed some issues that the doctor said might be psoriatic arthritis but it didn't explain all the other symptoms i had but for me to be alive this long and without any evidence or disabling symptoms i understand that it is unlikely it is a MND, after all i can still walk, i can still talk, drive, pick up things and even type this using both my hands, regardless of discomfort or pain or the feeling that its getting worse, i think google also really plays a negative part in all this as when you search certain things it always seem to pop up the worse case scenarios or links to peoples stories or issues that are usually one in a million, and then we start to assume thats probably the case.

I am scheduled to see a speech pathologist and rehabilitation doctor to check regarding my jaw etc, my neuro referred me to her not because he was concerned about MND's but he said some people don't have good coordination when they swallow and it needs to be checked and corrected, i guess he said if i actually did have abnormal swallowing or delay it would have showed up on the barrium video test thats why he isn't too concerned . Anyways if its alright with everyone here maybe i can just update this thread once i have any new results or updated news so that people who are worried or have anxiety issues and symptoms like mine can benefit from the information.

Again thanks alot for taking time out to answer my concerns, glad to see a fellow Blue Jays fan on here, im actually from Toronto, Canada but live in India at the moment.

Praying for everyone on here and for a cure to this terrible disease, if anyone else had any feedback i would highly appreciate it as well.
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