Old 11-21-2016, 12:33 AM #1 (permalink)
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Question Need some Advice regarding my symptoms

Hi there everyone,

its been almost 2 years since i last logged on here, i always hoped i would never have to come back but unfortunately i have found myself in a position where i need a bit of advice from all of you.

As mentioned in my post 2 years ago, i had started experiencing some neurological issues, especially related to twitching, muscle stiffness, a little bit of pain, initially not too many issues with weakness but it was more like perceived weakness, doctors did every test they could including blood work, ANA, MRI of the brain etc etc, in the last 2 years i have had 4 EMG's, last one was done in May of 2016 and they didn't find any issues other than a small issues with my Ulnar nerve which i think i damaged by sitting on my work desk too much and pushing down on my elbows and some some small issues picked up from my neck.

However in the past 2 years i can feel that my strength level has gone done significantly, my left hand gets tired very easily to the point that if i over exert it, it literally has trouble functioning and i have to rest it for a while to gain back strength , my fingers feel weak sometimes as well and a bit stiff on both hands, the grip has issues but weird thing is these symptoms come and go, worse on some days but not as bad on others, never fully recover tho, my swallowing and chewing gets affected sometimes as i feel tired and need to eat soft food or feel like food doesn't flow down, but on certain days thats not to bad either but my jaw feels stiff and hurts, same goes for my legs as i get tired easily, my speech has issues sometimes as well and i tend to stutter or say words wrong, however that also varies and does not stay the same.

At present i have twitching again all over my body and have developed a new twitch under my right eye which gets bad after i squint, smile hard or wash my face etc, my body feels floppy at times as well and exerting myself sometimes causes more twitching, but hands also feel twitchy inside especially around my thumb, i haven't noticed any atrophy but my left hand is a bit smaller as i am right handed however its difficult to tell if i have lost muscle compared to two years ago, same goes for other parts of my body such as my Biceps etc .

There's other symptoms as well but i want to save your time and get down to the main point which is could i still have ALS and it hasn't shown up yet ?

From all the post here its difficult to tell as they say the diagnosis usually takes 2-3 years but in my case i started checking these issues right away when i felt something was off, could it have been tooo early to be picked up ? i have avoided going to my Neuro for the past few months and am trying to stay strong, as i know there's things like Fibro etc that can also explain such symptoms and twitching can be benign but the weakness is the issue that i can not explain.

I would appreciate if anyone of you who has been through the same thing could tell me that is it still possible i haven't been diagnosed correctly and its starting to get worse now or i need to let the ALS side of things go and focus on other health issues ?

Thank you and looking forward to any responses

Lots of Love to you all
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Old 11-21-2016, 03:27 AM #2 (permalink)
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Default Re: Need some Advice regarding my symptoms

Ok firstly I need to address what you said in this sentence:
Quote:
As mentioned in my post 2 years ago, i had started experiencing some neurological issues
No you didn't - you were thoroughly checked and this was not a neurological problem.

This was a very good description you gave:
Quote:
my strength level has gone done significantly, my left hand gets tired very easily to the point that if i over exert it, it literally has trouble functioning and i have to rest it for a while to gain back strength
That is NOTHING LIKE ALS. This is perceived weakness, not clinical, and with ALS you don't rest and gain back strength, not even a little bit.

Please go back to the top of this forum section and read the post titled READ BEFORE POSTING. It really explains our official stand on what this disease is and how your symptoms do not match it.

I'm sorry to see your anxiety has taken hold of you again after 2 years. You can beat this, please see your doctor and get help.
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Old 11-21-2016, 04:37 AM #3 (permalink)
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Default Re: Need some Advice regarding my symptoms

Thanks for your quick reply, and i totally understand your point.

Not gonna bother you with follow up questions with if's and but's, i myself have been trying to be very positive about everything for the past 2 years and have stayed clear of these forums since they cause more anxiety and bother people with actual problems.

I just wanted to get some input on whether it could still be a possibility and if i should go back to my Neuro but your feedback has given me renewed hope to keep fighting and avoid getting my self stuck in this cycle.

I think i have read up enough to know what ALS sounds and looks like and if i did indeed get any such symptoms it would be obvious and a doctors visit would be a necessity at that point.

Hopefully it never comes to that.

Thanks again and any further feedback or advice will always be appreciated.

P.S i am based in Hong Kong and Bangkok, if anyone knows of any groups that help people suffering from MND'S and require volunteers to help in those places kindly let me know, i would love to help, any information would be much appreciated.
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