I believe symptoms of als

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Scarinca

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Hi I’m 49 I first discovered a pain in the back in august stiffness and unable to walk properly within a few months spasms twitches and numbness with stiffness developed and I can’t walk properly yet need to sit down muscle weakness in all my muscles and feels like it’s been paralysed, like I’m done every mri test possible yet no answers, it has travelled to my arms back and now neck and left side of my face I and feel extremely weak can’t do much at all earlier seen a neurologist who said all is ok , muscle mass seems to be wasting and getting worse , lost weight and my life has just stoped now I’m in the process of a second neurologist with more experience I still haven’t had nerve conducting test done yet but all indications lead to als disease as I have ruled out other diseases through test ,can’t believe it it’s happening to me yet any feedbacks as I was strong as a bull.
 

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Hopefully the link Nikki gave you has helped you.
We have some of the top ALS specialists in NSW. What part of NSW are you in?
Have you seen the second neuro and are they an MND specialist?
Is a neurologist saying all indications lead to ALS, or is that what you are concluding?
 

Scarinca

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Hi thanks for the reply yes ,I am
Assuming with the symptoms I have and feel ,yet I know it takes a while to diagnose and in the process with a more experienced specialist .
 

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Let us know what the ALS specialist says - who will you be seeing? (I live in NSW)
 

Scarinca

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Hi yes I have a appointment with Macquarie University clinic it’s in a months time I’ll let you know on the nerve test as it happens and feedback from the specialist.
 

Scarinca

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Hi I’m back I still feel weakness in my legs can’t walk arms and left side of my left side of my face ,have a neurologist appointment on Thursday ecg was done seemed ok , yet my condition is getting worse my mouth is affected and having a green toungue anyone experienced a green younger with pins and needles feeling with stiffness my back is getting worse and struggling to walk, I will update again after neuro appointment at am pretty sure it seems like als as I have ruled out most diseases on mri and blood works lost muscle ongoing from late July 2021 as I was quite a physical male with muscles, I have lost weight very concerned I am a shattered man can’t tell anyone as no one can understands the disease I live with my 85 year mother and have seperated from my partner cause of what’s happened .is it to early for Emg results how severe does disability have to be to show on emg test .
 

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A green tongue has several possible causes, including an infection. I would see your GP for that. Your neuro appointment is in a few days, so update us on how that goes, but I cannot see ALS in what you have described.

Best,
Laurie
 

Scarinca

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Hi had my specialist appointment today with the professor in the als clinic apparently one of the best when it comes to als diagnoses ,opinion on examination he strongly believes that I don’t have als disease , can’t work out what is going on but similar symptoms do appear yet his advice is keep on strengthening body with light walking , apparently the best in the country in Australia ,so I must trust his professionalism the best way to diagnose it is by physical evaluation on his advice with als clinic where they are familiar with examinations with the disease if anyone is in doubt .
 

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Glad to hear you have had confirmation that your fears of ALS are groundless. Keeping your mind and body fit are always important to feeling your best.
 

Scarinca

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Hi I’m still feeling weakness I’m not convinced, legs ,feet arms, Hands ,face neck face mouth; lower lip ,back And nose ,it’s a sort of a pins and needles ,l feeling of stiffness , and numbness that’s getting worse everyday ,my left side more affected than the right side ,neuro specialist said no als , yet I am getting worse and struggling to walk I need to sit on a recliner chair for support can’t stand up for to long , they did find weakness in my limbs and lunar arm elbow in the report and said there is evidence of length dependent sensory Polyneuropathy and they mention weakness in the report all my muscles feel like they have disappeared in all of the major joints I know what I feel this isn’t normal I’m fading away and no answers when I wake up in the morning it is Worse , I am extremely fatigued like being hit with a hammer and keep yarning all the time without doing anything.what do I do I’m struggling and with no support I’m lost and can’t move around.
 

ShiftKicker

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Hello-

Is there a reason why you have not accepted the doctors' explanation of polyneuropathy as the cause of your symptoms? It absolutely explains your symptoms. It sounds like it's time to visit with your doctors to track down the cause of it and figure out a plan with them. Continuing to focus on a disease you've been cleared of and dismissing the actual cause of your symptoms seems a bit counterproductive.

I hope you are able to accept your doctors' conclusions and will work with them to find some relief.

Take care
 

Bestfriends14

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I'm sorry, your run-on sentence makes it difficult to decipher what you're saying. You've been cleared of ALS, so from what I can gather, you doubt one of the top neurologists in Australia? You don't evidence ALS at all.






Good
 
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Scarinca

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Hi I’m praying it’s not als thanks for the reply ,yet I can’t move around mabe it was to early for the diagnosis as it can take time to diagnose weakness does not just appear for no reason it all started from August 2021 started from the back and progressed to legs arms nose hands face neck and lips the only way to diagnose it is with a physical exam that’s what he said to me now if I’m still in the process of it how long does it take to diagnose.
 

ShiftKicker

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Why would you not believe the the doctors when they have already provided you a reason- polyneuropathy?

If you are experiencing the profound issues you report and it were ALS, it would have shown on EMG-which it did not. As the cause of your symptoms is something else, you must set aside your focus on ALS and work with your doctors to deal with your actual diagnosis.

Please speak with your neurologist about your concerns and to get more information on your condition. The neurologist is the person who should be providing you guidance and explaining the results of any exams and tests you've had and giving you an idea of treatments and symptom relief.
 
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