Bulbar mnd

[Ellie]

... all I want is a straight answer off someone

You're looking in the wrong place - that's a Doctor's role, which is why you have to follow up with a medical professional.

You're wasting your time by asking the same questions on this MND Forum over and over and over and over again because you simply cannot get that "straight answer" here.

[Johnny5]

Benign fasciculations are not to worry about. They may keep you up at night, but if they are not detected in an EMG, it probably is not MND. Swallowing difficulty can occur at any stage of Parkinson's disease (PD). There are other things that can cause these symptoms. Only a professional can properly diagnose your symptoms.

Take a deep breath, and think about the compulsive nature of your inquiries. Obsessions like this can be considered a mild, yet troubling, mental health issue. Medical professionals deal with this type of thing every day, so gauge yourself. Do you trust your doctors? Then talk to them because they are the ones that are responsible to you. If you do not, find a new caretaker who you can trust. Write a log, and hand it over to your doctor. Let him worry about it.

[Banned]

Hi mnd connect

My neurologist has reffered to a dr srinivasan a specialist mnd neurologist at the mnd clinic in Birmingham queen Elizabeth hospital due to throat muscle weakness hypopharynx and pirifossa forma , I thinck they want to start the testing all over again , all that was found on the 2 emg tests were ulnar dysfunction and 4 x fasiculations on last emg , no other findings were found , would the last emg I.had off picked up something if it was there .there was a 9 month gap between the 1st emg and last one .

All.the best

Craig

[MNDConnect]

Hi Craig

I am sorry that this is still a concern for you. The only person who can answer your questions is a neurologist. We are always happy to speak to you over the phone as sometimes it can help with your concerns so please do contact us if you need to on 0808 802 6262.

Best Wishes

Rachel

[Banned]

Good morning

I went to the mnd clinic yesterday at the Birmingham Qe , to see mnd specialist neurologist, he carried out a full clinical exam , all that was found was brisk leh reflexes and tremor on tongue examination ,at the end he said no evidence of mnd ,but would like me to re attend in 6 months time for a emg and in mean time he get a spine mri.and lung function test, is this normal procedure haveing been told no evidence of mnd and 3 emgs and 3 clinical exams , I was hoping to draw a line in sand with this.

Many thanks

Craig

[Mary C]

Hi Craig, that’s great news that there is no evidence of MND .
So your neurologist will see you in 6 months time and other tests in between.

So it’s not MND ..seems like neurologist wants to do tests to see if there is anything else going on.
Thats the best news ever…that it’s not MND.

For your own sanity you probably need to stop reading and posting on this site and try and take your focus to something else.It sounds like your life is weighed down worrying about your health.
Trust the neurologist and make today a better day by releasing yourself from any further thoughts about MND .
Best wishes
Mary

[Banned]

Hi mary

It is great news as he is mnd specialist neurologist, I'm just wondering why he wants another emg done in 6 months and another consultation.

Have a wonderful xmas


All the very best

Craig

[MNDConnect]

Hello Craig

As we have already discussed it is fantastic news that the neurologist can see no evidence of MND.

As the neurologist would have explained to you, he will to be asking for further tests to be carried out to again confirm that you do not have MND and to see if they can find any other medical reasons for your health issues.

You really need to try to see this as a positive that he said you don't have MND. Try to focus on that, as worrying about having MND when you do not is no good for your physical or mental health

Best Wishes

Andrea

[Banned]

Hi is it standard to have to.have a lung function test and mri off spine even though the mnd consultant has said no.evidence of mnd , I really dont see the point in haveing these test in 5 months time and a another emg in 6 months , I was hoping that was the end off it last week.do I have to 5ake the tests , after 3 emgs ,3 neurological exams one with a mnd neurologist all with no evidence of mnd .

Many thanks

Craig

[JFarrell96]

If you’ve had 3 EMG’s and 3 neurological tests and you’ve been told there’s no MND then there isn’t anything to be concerned for it’s easier to say than do I suffer with health anxiety I’ve only seen 1 neurologist in 2020 and he said I have no MND i asked for a re referral to my GP on November 4th my neurologist rejected my appointment and said it’s all anxiety and I don’t have MND I have to try my hardest to stop thinking about MND but when I say it’s hard it really is but you’ve had 3 emgs and 3 neurological tests to no MND suspicion I would definitely not be thinking it’s MND after that amount of tests and checks in my opinion, if you ever need a chat privately message me I might not be amazing at advice but I can offer some help at least.

take care

[Banned]

Hi mate , many thanks , yes the emgs the gap between the 1 and 3rd was 12 months,the last clinical exam was with mnd neurologist at Birmingham mnd clinic, he was very thorough and only found brisk reflexes in legs , but at the end off the exam he said there is no evidence of mnd , I've had this in worry for 17 months , I'm a ex British army infantry soldier and nothing in the army I did ever worried me like this has , dose this terrible disease cause muscle itching and constant sweet sour taste in mouth ..I really dont want to waste nhs time and money if there is no need to .

Best wishes

Happy xmas

Craig

[MNDConnect]

Hi Craig

You've been told by the neurologist that you don't have MND. There is nothing to suggest that you do have MND. The forum is not the appropriate place for anyone to get advice on possible diagnosis, test results, etc. Please also see the private message that I have sent to you.

Best Wishes

Rachel
MND Connect Adviser

[JFarrell96]

I have replied to your private message mate, I have been told I don’t have MND but muscle itchiness and sweet sour taste in mouth is nothing to do with MND, as many would say muscle itchiness is sensory and not motor but for the taste I would never say taste is something to do with MND

[Banned]

Hi mate , I spoke on phone to mnd nurse who was in room with me and mnd neurologist at the Birmingham qe , when he said no.evidence of mnd, tshe has agreed to discharge me without any further testing , I'm just hoping the consultant was honest with me about no evidence of mnd , I hope he would of told me if there was any suggestion of it.still got all over twitching none stop , I'm going to try and get this out of my head now.

Happy xmas

Craig

[Helen212]

Great news Craig

feel very relieved for you. Hope you have a restful Christmas without this worry

kindest Regards
Helen