Been referred to MND Clinic

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Becca15

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I posted on here with my symptoms previously. I was dismissed by many.
I’ve seen a lot of people on this forum get dismissed like I did only later to get a diagnosis. I will not be coming on here for advice anymore as the attitude of some has put me off. It’s left a very bad taste in my mouth with some of the responses I previously had and I’m not the only one to have had this sort of response. What happened to “be kind”?
Some people on this forum need to show more compassion. EMG’s can be normal in the beginning BTW. Widespread twitching isn’t normal at all.
I’ve been referred to ALS Clinic with suspected ALS.
Bladder weak, abdomen weak, 2 dirty EMG’s (PSW, reduced recruitment, instability, fasc potentials) muscle loss in face, voice affected, choking on saliva, spasms, cramps and Atrophy. I was told by people on here to see someone for my anxiety and that my symptoms sounded nothing like ALS!!!!!!!!!!
Kindness and compassion don’t cost anything.
I’m so sorry for all affected by this disease.
God Bless
 

Bestfriends14

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You've not had EMGs that are "dirty" in a sense of ALS. That's not a technical term anyway. Widespread twitching, as you've been told numerous times, points away from ALS. I'm sorry that you feel you've been treated poorly here, but there are only so many questions forum members can answer before becoming impatient when signs clearly do not point to MND.

So, what brought your referral to a MND clinic? Certainly not your symptoms or clinical exams, unless I'm missing something? Clinical weakness (not perceived) is the hallmark of ALS. What is it that you can no longer do that you could before? Not "what is hard" or "I feel weak", but actual failure?

I must be missing something from your previous posts because nothing you've listed points to this disease. I apologise, but I'm a bit confused
 

Clearwater AL

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I rarely post anymore unless... You've had 28 messages, you've researched this site
endlessly, probably Dr. Google too. I have most of your posts. Why you have been
referred to an ALS clinic is amazing... if true or you have misunderstood where
you are being referred to.

Those you referred to who were dismissed but later diagnosed maybe one out of 50
over time then we have to take their word they were actually given a confirmed
diagnosis.

You end with "God Bless"... I hope God blesses you with help for your Health
Anxiety and gives you the wisdom to believe our extremely ALS knowledgeable
members and the doctors you've seen and will see.

I disagree that you have been treated poorly (your opinion)... if being told the
way it is has offended you that's not much more we can do help you with.
There's easy choice... leave the forum. Maybe there's a ALS support group in
the UK. No... I wasn't kind in my rely. Just being blunt.

I hope you can move on from this.
 

Becca15

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Unable to smile anymore. Unable to push out stool. Fingers stiff.

You were very dismissive but not just to me, lots of people who are now diagnosed with ALS after your rude and dismissive comments. They don’t want to post back because of this and I don’t blame them. I’m also choking on my saliva and my voice is affected. Is there anything else or other Info you need from me before you dismiss me yet again? Yes, I’ve been referred to MND clinic. It’s not a mistake. They don’t do that for nothing. Please be kind and considerate to people on future. It causes them distress if you carry on with that attitude. You’ve dismissed loads of people with symptoms who have come back with a diagnosis. Would you like me to post their accounts too.

Oh btw I’ve had 2 dodgy EMG’s with PSW, reduced recruitment pattern, instability, fib potentials. MRI confirmed facial and neck atrophy but it’s ok. Like you suggested, I’ll forget about it and blame it on my anxiety even when the neuro doesn’t think it is anymore. Yes my doctors are now seeing it’s not anxiety. Your advice is great. I’ll address my anxiety and carry on choking on my saliva. Way forward hey. Thanks for the nasty comments. MND appt this week. Oh and I’ve lost most of core strength to the degree I have to self catheterise. Psychiatric evaluation told me it was over shadowing from doctors. MRI picked up on atrophy in my face and neck too. Thank you for your support. Means a lot 😩
 

wishmobbing

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I will not be coming on here for advice anymore as the attitude of some has put me off.
Okay. You're not coming for advice. But you keep coming back.
Unable to smile anymore. Unable to push out stool. Fingers stiff.
I'm sorry your suffering. We can't give you more than the advice you already heard.
This sub-formu is to help during the diagnostic process. It's not there so you can talk us into believing you that you have ALS. There's no point to it. You either have it or you don't. No one can change anything about it.
Is there anything else or other Info you need from me before you dismiss me yet again? Yes, I’ve been referred to MND clinic. It’s not a mistake.
We don't want to dismiss you, it's just not about getting recognized here.
We don't need anything else from you until your visit to the MND clinic. Please give us an update after that. Please try to stay away from ALS forums and Facebook groups an they seem to get you agitated and not do you any good.
 

Becca15

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Absolutely disgusting judgmental individuals on here. Won’t touch this forum with a barge pole anymore. No kindness and doubtful. I’d rather stick pins in my eyes than get advice from here. Loads of people asked for advice on here and was told it was in their head or no ALS only to be diagnosed.

Wow when there’s treatments out there that nobody can get

Agitated!!! when people are dying and get nothing! I have my children who need their mum
 
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wishmobbing

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Won’t touch this forum with a barge pole anymore.
And yet you post five times in a row. This is you lashing out probably because you are anxious, hurt and don't feel heard. You've been heard.
Great your MND appt is already this week.
 

Becca15

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Yes it is this week. Im not anxious, just very upset with the doubt and unkindness from certain individuals in this group who have given the same disrespect and disregard to many people I’ve spoken to on here.

Prior to their diagnosis
 

wishmobbing

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Then why go back to those people you are so disappointed in? Get away from the internet and back into the world. Be with your kids. Especially if you worry about dying. Be with the ones you love, not with the ones who seemingly dismiss you.
 

ShiftKicker

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Becca, I will be closing this thread to replies. It's clear engaging here is not providing new information at this time. The forum exists to provide support for those who have been diagnosed and their caregivers. We can answer only basic questions for those seeking diagnostic advice, and recommend people return to their doctors if there are further questions specific to your needs. It is simply outside of the function of this forum to provide the type of diagnostic confirmation you are desiring. This is not a dismissal of your symptoms, as has been said in the past, but an acknowledgement that your needs are outside the scope of this forum.
 
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