Bulbar mnd/als

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Bestfriends14

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Craig,
Please follow the advice that the very knowledgeable forum members have given you. The type of swallowing issues you mentioned are not present in ALS onset. Had you read the "Read before posting sticky", you would know the typical symptoms of ALS onset. And everyone has been sick before, so to say you have never been ill, is just is not realistic. The U.K. is coming out of lockdown, so an appointment should be easier to get (hopefully).

Please work on your anxiety and take ALS off the table. You don't have it, you don't evidence having it, and no one but you thinks you have it. Please work on that. I'm sorry to be blunt, but what a waste of energy you are spending on a disease you don't have. Please realise how blessed you are to be (physically) healthy.

Good luck and take good care
 

This is me

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I think you should get a second opinion from another doctor if you haven't already. I have had doctors tell me in the past that my symptoms were nothing. My endocrinologist told me to see a psychiatrist when I told her my thyroid was off. She said labs were normal. I ended up having nodules on my thyroid. When I went to my pcp because I was falling and having increased weakness when hiking, she did a brain MRI and said it was normal. No further tests. Guess what? Those symptoms were ALS. I waited 3 years to get that diagnosis because a doctor said there was nothing wrong with me. Tell your doctor there is no blood test for ALS. Please people, don't poo poo this person. When I started having muscle twitching and cramps, I thought everyone experienced that. I didn't know it was abnormal.
 

lgelb

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A three-year onset without diagnosis is very unusual, as would be diagnosis at a point of only cramps and twitching and no functional impairment.

At any rate, our advice to you, Craig, is based on more than what your doctor said. It is always your choice as to whether to pursue further testing.

Best,
Laurie
 
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This is me

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I feel you are very unsympathetic. There have been people diagnosed prior to functional decline. I have slow progressing ALS, and I ignored my symptoms for 3 years after I was told the Brain MRI was normal. I also know many people with ALS who took years to get diagnosed because the doctors didn't believe them or were uneducated about ALS. Read some of the stories on people diagnosed after fasciculations started. Don't ever give someone a mental health diagnosis because their symptom presentation is different from yours.
 

Bestfriends14

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This is me,

Craig has had absolutely no progressive weakness, or any clinical weakness at all. This is very different than your path to diagnosis. He's been told on more than one occasion that he has no symptoms of ALS onset. So, to ensure we do not unnecessarily frighten those that are already anxious, telling our own stories should correlate with similar symptoms and yours does not.

I'm sorry you were diagnosed with ALS. I hope you are keeping safe and well during these crazy times.
 

lgelb

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Denver, to ensure that we disseminate accurate information, I will only note that brain MRIs don't diagnose ALS, so being told your brain MRI was normal wouldn't play into the diagnosis, apart from helping to rule out certain mimics. Perhaps you meant an EMG?

If you would like to share more of your own path to diagnosis, we can better explain why it will differ from most CIBALS stories you will read here.
 

Cae77

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Hi everyone

Its is correct that I have no muscle weakness ,I work now as a heating engineer so I'm on the go at least 11 days ,and I cycle at least 3 times per week , and my neurologist signed me of with no mnd after carrying out 3 blood tests ,and clinical examination, I asked him if emg test was needed ,he said not needed, I have payed privately for emg test tommorow, which my neurologist has agreed to ,in his words for peace of mind,
My symptoms are exactly the same ,all over muscle fasiculation and swallowing is getting worse ,also feels like I'm starting to nasal speak some words , I have never had health anxiety in my life ,so why would I start now ,I get up for work every morning and I am constantly very anxious with what is wrong because other than haveing the odd seasonal cold and flue I have never had any form off serious illness ,all my joints click ,again this never happened until the fasiculations started , there are people on the uk mnd forum site who got passed as no mnd 2 -3 times until they had emg test and then they were confirmed as mnd, also when I'm speaking my palet click along with ear tubes , so that is why I'm very worried ,and I am worried about the results tommorow of the emg test.
Once again I have the up most respect to you brave folk who am battling this cruel illness to take your time to respond to people like myself who are extremely worried.

God bless you all.
Craig
 

Nikki J

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Good luck tomorrow. Please let us know after you get the results from the neurologist
 

Cae77

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Thanks nikki.
 
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