Back again -sorry to ask for advice

[MNDConnect]

Hi Andy

I am sorry to hear that your symptoms are still concerning you. There is no one on this forum who is qualified to look at your reports and give their opinion. I have to stress that you should be cautious about posting medical reports online to seek opinions as this could easily result in you receiving mis-information which isn't going to be helpful.

I also can only reiterate the information that I gave you previously. Your symptoms and the length of time that you have been experiencing them do not suggest that you have motor neurone disease (MND).

You've seen 6 neurologists at some of the top specialist centres for MND. You really do need to listen to what these specialists are telling you and take their advice.

I know that once you are concerned about a disease like MND, it is incredibly hard to put those fears to rest but you need to start to focus on what those 6 specialists are telling you.

If you want to discuss this further then please do feel free to give us a call on 0808 802 6262.

Best Wishes

Rachel
MND Connect Adviser

[AndyM]

That's a question for your (highly trained) Neurologist.

Is the Neuropsychiatry appt to do with the FND diagnosis?

Not sure Ellie -think they are just fobbing me off and keep going back to the anxiety status ,its the reduced recruitment that worries me

[AndyM]

Andy what is your current body weight and BMI?

I am a Big Chap Matthew 23 and a half stone and BMI around 40

[matthew55]

Andy what is your current body weight and BMI?

[Ellie]

I wonder if somebody can break it down for me as it shows 3 areas of concern and reduced recruitment in both lower legs

That's a question for your (highly trained) Neurologist.

Is the Neuropsychiatry appt to do with the FND diagnosis?

[AndyM]

Sorry to post again but my symptoms are progressing and I asked my GP to refer me back to Local Hospital who initially discharged me in September 2017 saying my main symptom was Anxiety!!! I have been Private twice and basically got no definitive diagnosis , was told i had Sleep Apnea then I didn't , got bodywide fasiculations , muscle loss in arms and legs ,fatigue ,pale skin especially hands and feet , oedema in feet and lower legs ,I even went to National Neurological Hospital last November again they told me Anxiety and that i had to lose a lot of weight to alleviate symptoms ,has made no difference ,In February this year I saw a Neurologist whom i had seen initially privately ,he again said i needed counselling but agreed to get an EMG done for me which i had done in April -his words was he was organising it against his better judgement!! anyway find attached I wonder if somebody can break it down for me as it shows 3 areas of concern and reduced recruitment in both lower legs -Many thanks , today i received a letter from my Local Hospital declining my referral and stating that i should get referred by my GP to the Neuropsychiatry Unit at National Neurological Hospital in London -I am now 3 years and 9 months since first symptoms but all I get is that its anxiety /in your head response from medical professionals even though the EMG shows something is going -Sorry to ask again -Kind Regards Andy

[Sunset1964]

That is such a long tíme Graham you give good advice

[Graham]

It was 2 years before I was diagnosed with MND. It is very difficult to diagnose MND, however a whole gene test would reveal your susceptibility. If you really need to know, it may cost you, or count your lucky stars that your disease is relatively benign. And there are some benign forms of MND that you may like to research.

[Sunset1964]

Hi Andy it's horrible when you have symtoms but don't no what is wrong you just need someone to say this is what it is and give you some treatment, I think with the amount of emgs you have had something would have shown up by now I really hope you get some peace

[AndyM]

Hi Andy

I'm sorry to hear that your symptoms are still concerning you. After 3.5 years, someone with MND would likely be quite severely disabled. Even with a slower progressing form of the disease, the person would most likely be showing signs of clinical weakness which would be picked up on examination by a neurologist.

6 neurologists and 4 EMGs is a lot of investigation, far more than someone with MND would usually have. I think you do need to follow Ellie's advice and listen to the 6 experts that you have seen. There is nothing to indicate that you have MND.

If you'd like to discuss your concerns further, then please give us a call on 0808 802 6262. Whilst the forum is an excellent place to access support, it is not a place where members should be advising about symptoms or possible diagnosis of MND.

Best Wishes

Rachel
MND Connect Adviser

Hi Rachel , Thank you very much for your response , I do question the time frame myself as now 3 years and 7 months into symptoms of which i stated in my original post and i just seem to have got no where really , I have so many bodywide symptoms which to me points to a systemic problem and all i get is that it is most probably issues with my spine and that i have a high level of anxiety -I even went down the route to prove that i am not suffering directly from anxiety but am anxious due to the physical symptoms that i have developed -I hang onto the timescale though and did phone your helpline on the 3rd of this month and spoke to Andrea who was very helpful and said that the timeframe was in my favour and if it was MND i would have one of the really slow onsets and practically unheard of to go this long without some sort of limb failure .Thank you again for your reply .Andy

[Sunset1964]

Hi Andy, I think after that length of time something would show up, or on the emg,maybe try a MND specialist?

[Graham]

I totally agree.

It is important to watch all posts. I have been on this forum the longest and have noted people leave because of rude posts.

Let's play nice and not assume people have nosophobia.

[Admin_MND]

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[MNDConnect]

Hi Andy

I'm sorry to hear that your symptoms are still concerning you. After 3.5 years, someone with MND would likely be quite severely disabled. Even with a slower progressing form of the disease, the person would most likely be showing signs of clinical weakness which would be picked up on examination by a neurologist.

6 neurologists and 4 EMGs is a lot of investigation, far more than someone with MND would usually have. I think you do need to follow Ellie's advice and listen to the 6 experts that you have seen. There is nothing to indicate that you have MND.

If you'd like to discuss your concerns further, then please give us a call on 0808 802 6262. Whilst the forum is an excellent place to access support, it is not a place where members should be advising about symptoms or possible diagnosis of MND.

Best Wishes

Rachel
MND Connect Adviser

[Graham]

You can go private for a gene test. The neurologists have a habit of fobbing people off and saying, 'It is all in your mind'. Very seldom are they right Andy.