Help needed

[MNDConnect]

Hi Edinburgh21

You really need to try to stop worrying about MND. You've been told several times now that you don't have MND. If you had CO2 retention then it's likely that your O2 levels would be dropping and so A&E would have picked up on it. CO2 retention is something that happens and most people wouldn't even realise that it's happening. It isn't a symptom that people usually report themselves. It's picked up by a clinician.

The respiratory symptoms and swallowing symptoms that you describe do not sound like symptoms of MND. They don't typically appear in the way that you are describing.

I think you need to bear in mind that you are talking to people who are living with MND. Posting that you've been diagnosed with a rapid onset that is so fast that you won't have time for a diagnosis, is very distressing to people who are living with the disease or those who are suspected of having MND.

Best Wishes

Rachel
MND Connect Adviser

[matthew55]

Edinburgh21 You do need help but professional mental help and your mother needs to be reported.

[Edinburgh21]

I am truly sorry for putting that, I was in a blind panic at A&E but that is no excuse.

I had/have put two and two together with symptoms my mother had, but again it is no excuse.

[Ellie]

Hi all, it wasn’t good news i’m afraid.

Very rapid onset so won’t have time to get a proper diagnosis. Still walking and talking so seems a strange manifestation.

Shame on you for pretending to have been diagnosed with MND, that is unforgiveable - now you expect more input???

[Edinburgh21]

Hi all

Apologies for my previous post. I had gone to A&E in a blind panic as I believed I had breathing issues. They tested my vital signs and sent me away again. I was trying to tell them CO2 retention is the issue not the O2 levels but it fell on deaf ears.

So the current position is the Neurologist I saw just took some details, tested reflexes and did a general exam of me to test weakness, no EMG etc despite me mentioning breathing/swallowing issues and said the symptoms could all be explained by more benign reasons.

Now I am currently in the position of not being able to swallow without concern the food and drink are completely going down the right way as sometime my nose runs at the same time and I frequently cough. When I spoke to my GP has assured me that if it was going down the wrong way you would definitely know straight away. (Is this correct?). Given I feel thirsty and dehydrated no matter how much I try to drink and have dry skin in places I am not too sure, especially as losing weight too.
They also said MND would not present breathing and swallowing issues without significant other indicators first, not sure that is true!

I’m also concerned about breathing and CO2 retention, yawn a lot in the afternoon, have blotchy skin on the forehead and am worried to go to sleep at night!

Finally I’m forgetting things here and there and don’t have a great attention span at the moment- could be stress related but it is a bit worrying with the other symptoms i’ve got as mentioned on my original post.

Once again apologies for my last post and I would appreciate your thoughts as I’m hitting a brick wall medically.

[Ellie]

Very rapid onset so won’t have time to get a proper diagnosis. Still walking and talking so seems a strange manifestation.

🤨 I am rather confused

Who has told you what? 🤔🤔

[LindaB]

Hi Edinburgh21 sorry to hear you're bad news....you'll find lots of good advice and support on here. Now you have a diagnosis support should start clicking into place from all the neuro medical teams
Take care...just a day at a time


obviously I took the post at face value...dear oh dear...

[matthew55]

Chin up and Stay Strong. You're not alone my friend.👍😁🤗🌷xx

[Johnny5]

Hello Edinburgh21,
Sorry that this happens to anyone, but you are in the right place. So far you are walking and that is good news. Never give up!

[Edinburgh21]

Hi all, it wasn’t good news i’m afraid.

Very rapid onset so won’t have time to get a proper diagnosis. Still walking and talking so seems a strange manifestation.

[Edinburgh21]

The ‘buzzing’ is what frightens me the most, it’s all over the breathing and back area and I already having to have several pillows to prop me up- not that i’m sleeping anyway. I have the CO2 headaches but the docs and A&E will only test O2 and peak flow.

[matthew55]

We are a friendly, helpful and supportive group, but we are not medically trained and we are not doctors. 👍🤗xx

[Johnny5]

😲😲 Erm, hello... Believe it or not, not all Neurologists are male.

No doubt. Expediency got me. The only one I have come to trust is a male. Sry.

[Ellie]

You will see the Neurologist, he will set up a plan to diagnose what is going on with you. He is trained to diagnose many different causes of those symptoms you have. Trust him :-).

😲😲 Erm, hello... Believe it or not, not all Neurologists are male.

[Johnny5]

Always best to go with the medical specialists that deal with these issues. Self-diagnosis does nothing but drive one up the wall of stress, and it is a very high wall. This is a list of ALS mimic's that are most common. In reality, fear is a big motivator when an individual begins to get symptoms like this, yet, it is that fear that magnifies the condition because you become ultra-sensitive to those symptoms.

Just relax because you are doing the right thing. You will see the Neurologist, he will set up a plan to diagnose what is going on with you. He is trained to diagnose many different causes of those symptoms you have. Trust him :-). Then verify what he tells you by getting a second opinion from a different specialist.