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UKGIRL

New member
Joined
Feb 19, 2014
Messages
5
Reason
Learn about ALS
Country
UK
State
Nottinghamshire
City
Nottingham
So I am a 24 year old who lives at home with parents.
In December I started getting tingled in my limbs. I went to the doctor but she saw no reason to carry out any further tests and sent me away.
Fast forward to now and wow, within the space of two/three weeks I've been hit like a tonne of bricks by this thing.

I went to the hospital yesterday because I couldn't breath properly, felt like something heavy was sitting on my chest. Coughed up saliva from my lung.
On the way there I involuntarily emptied my bladder. I arrive at A&E panicking, tell all this to a doctor who after making me wait for three hours, sends me away with indigestion tablets of all things. Tell her/show her that I have visible atrophy across my stomach that is now almost completely useless and I'm told they are 'stretch marks'.
Mum comes with me to this appointment where I am labelled as nuts/hypochondriac. She believes me and shouts at me for ruining her day.

Wake up this morning with extreme fatigue, dizziness, excessive sweating, flushing hot and cold struggling to hold my head up independently and double vision. My face and cheeks have tightened considerably and my appetite is practically none existent. Go to the doctors and explain no longer in control of my own bowel/bladder movements and all the other symptoms. Unbelievably he sends me away with a form for a blood test.

I have now just been shouted at by my mother after belching up saliva again (3 times tonight). Told I am doing it for attention even though I was genuinely struggling to breath. I'm sat here alone terrified and with no one to turn to.
I don't what to do. Bad enough going through this at only 24 but have a none existence support network. Parents think I'm crazy. Doctors aren't listening and ER turn me away. Where to turn now? The pressure on my chest is unbearable at times and I notice weakening limbs every day.

Please god someone give me some advice/support because I'm completely alone and terrified right now.
 
Why are you on MND site? Nothing you describe sounds like ALS.

Get your blood work results and go from there. Personally, I suspect your incessant fretting is making things worse. Acid reflux is a reasonable explanation for some of your symptoms. You might try over the counter such as rolaids or tums and see if that helps. Atrophy is unmistakable - trust me, if a doctor observed it, you would have been told. I am reasonably certain the physician did not call you a nut!

In the interim, contact a counseling service for an immediate appointment. You need a one on one consultation with a therapist to help you through this this trying time in your life. No one here can help you in that regard.
 
Hon--you don't have ALS. we cant support you. have you gotten the blood work done? If my daughter had those symptoms I would be thinking pneumonia which is going around right now. it could have started in December with a mild case, but progressed to now.

The symptoms you have are absolutely not ALS--I would guarantee it. Go get your blood work done, and follow up with the doctor. in the mean time, try to not act so melodramatic. I would guess that you probably have a history of being "sickly" with no explanation and the doctor and mom are tired of it which is why you are not getting support from them. The internet is not where you should be getting your medical information.

Good luck
 
Hon--you don't have ALS. we cant support you. have you gotten the blood work done? If my daughter had those symptoms I would be thinking pneumonia which is going around right now. it could have started in December with a mild case, but progressed to now.

The symptoms you have are absolutely not ALS--I would guarantee it. Go get your blood work done, and follow up with the doctor. in the mean time, try to not act so melodramatic. I would guess that you probably have a history of being "sickly" with no explanation and the doctor and mom are tired of it which is why you are not getting support from them. The internet is not where you should be getting your medical information.

Good luck

My blood work showed low iron.
Everything else was normal. I went to get some new tests done today because I had blood in my urine but they won't be back until next week and I'm feeling weaker every day.
Getting pain in my side consistent with area where kidney is. That's one of the only places I can feel pain any more. The rest of me feels as though it's slowly numbing. I used to be in pain constantly before this and now I barely feel a thing.

As for the doctor, she barely glanced at my marks because she said it was extremely unlikely for my age but I have visible dents in my cheeks that appeared round about the same time as my facial cheek tightness. I have googled atrophy and what I see seems consistent with the marks I have. I should also point out that this doctor never even bothered to check anything other than my blood pressure before declaring me 'fine'.
I told her I was swallowing persistently and involuntarily (and now struggling to swallow at all) and she said it was reflux.
But I have taken several tablets for the chest tightness and no matter what I do it never goes away.
Before I left she tested my blood pressure and my lung function I believe (don't know how since she ever got me to breath in anything). These stats were normal apparently. Wouldn't pneumonia show up with that test?

Can I ask what about my symptom makes people so sure I'm imagining all this?
I have also been having frequent bladder problem including persistent night time urination but I have never lost control of it like this before. I've also never had the feeling that I can no longer communicate with my own bowel.
I'm terrified. Getting a lot of timgling/burning in my spine too. A lightning blot sensation shot through my neck last week for no reason.

I know people must hate posts like this but I admire so much the strength of some people on here.
Im sorry if you hate me for posting things like this. I'm just in a genuine panic with no one to turn to.

Thank you and Ottawa girl for your responses. :D
 
You're right! We dislike posts like yours - because this is an ALS site - and we believe you do not have ALS. If you are in panic mode, please call a distress line. Or a therapist as suggested.

Your Mom knows you better than we do. Could she be right? ( don't answer - it's a rhetorical question). Doctors are listening - it's their answers you are grappling with.

There is nothing we can offer you.

Over and out.


Fyi - atrophy occurs slowly over several months... Unless it's a limb in a cast. I doubt your face and torso have been in a cast? If yes, then you know it's the cast - not MND.
 
You're right! We dislike posts like yours - because this is an ALS site - and we believe you do not have ALS. If you are in panic mode, please call a distress line. Or a therapist as suggested.

Your Mom knows you better than we do. Could she be right? ( don't answer - it's a rhetorical question). Doctors are listening - it's their answers you are grappling with.

There is nothing we can offer you.

Over and out.


Fyi - atrophy occurs slowly over several months... Unless it's a limb in a cast. I doubt your face and torso have been in a cast? If yes, then you know it's the cast - not MND.

I've say I only just noticed the marks because my muscles felt weak so I was checking my face more and that's when I noticed. There's every possibility they could have been there for longer and I just never noticed. Sorry for not making that clearer. I shouldn't have phrased it that they suddenly appeared around the time of my cheek tightness. I should have phrased it that that's when I first noticed them.
I have compared them to old photos of me and they definitely weren't there before.
I'm sorry you dislike my post. I wasn't trying to upset anyone. :(

I have been experiencing involuntary twitches and jerks too including a very severe full body one while typing this.
I also fell over twice today.
I get frightened and I genuinely believe I have cause for concern and just wanted to speak to some people who I felt could identify with the fear and uncertainty when waiting on a diagnosis.

Again, I wasn't trying to upset anyone.
I'm just frustrated and concerned whilst I wait on a diagnosis. I thought since this forum is called 'Is this ALS' then it was ok to post things like this here.
Sorry for any upset/offence I've caused. :sad:
 
It is indeed "do I have ALS?" sub forum. You asked, we answered: NO! Even if you have just fallen over twice today. It's still NO!

Just so you know, angst ridden apologetic troll types invariably add new symptoms to each post. Such as twitching, jerks etc. "Old photos?" You're only 24 - maybe you're losing your baby fat? Please, young lady, you have not upset me - only ALS upsets me.

Come back, if you must, AFTER you've consulted a neurologist. Or therapist. Whichever comes first.

In the meantime, and speaking from experience, by wearing depends for your incontinence, you'll notice these will also help soften the landings when you fall. Squishy, but fail safe.
 
UKGIRL,
You don't have ALS. See a therapist and then please go away. We can't help you at all on this site.
 
Big hug my lovely. You obviously don't have ALS but I believe you when you say that you are ill and scared. Keep strong and keep hassling the doctors. You have to be persistent sometimes. You won't get any sympathy on this site as the people on here have extreme anger issues, not surprisingly. I feel so sad for them and cannot begin to know what they are going through. I have felt very scared over the last few months due to symptoms very like ALS. I was not believed by my family, the medical profession and even people on this site. I have now a neurological diagnosis and actually it is the sadness at being let down by the people that I turned to for help that hurts the most. God knows though. He understands and he loves me and you. I wish I could chat to you in person. Stay off this site though. You will gain nothing, get abused and you don't have ALS. Xx
 
banksm, you wrote, "Stay off this site though." I notice you are still on line here. WHY? Now just follow your own advice.
 
It is indeed "do I have ALS?" sub forum. You asked, we answered: NO! Even if you have just fallen over twice today. It's still NO!

Just so you know, angst ridden apologetic troll types invariably add new symptoms to each post. Such as twitching, jerks etc. "Old photos?" You're only 24 - maybe you're losing your baby fat? Please, young lady, you have not upset me - only ALS upsets me.

Come back, if you must, AFTER you've consulted a neurologist. Or therapist. Whichever comes first.

In the meantime, and speaking from experience, by wearing depends for your incontinence, you'll notice these will also help soften the landings when you fall. Squishy, but fail safe.

I'm not a troll and I'm not making any of this up. I wish I was. :sad:
I add more symptoms because the list is long and complicated. For example the very first symptom was involuntarily swallowing and it scared me but when I asked a nurse she said we all swallow involuntarily and this was normal so I was confused. And the twitches didn't scare me as much as the chest pain and breathlessness which is why I mentioned that at first.

Doctor confirmed I've put on weight, not lost it so the dents aren't baby fat.

I just wanted some support until I could see my GP again.
I welcome anyone's inpoint at this point.

Thank you for the replies. I genuinely didn't come here to be an 'angst ridden troll'. I ust wanted to talk. :sad:

Skipper. I'm sorry. I'll go now.

Thank you Banksm
That's a lovely post.

I am scared. I understand people are going through a lot on here but I thought with the forum being 'is this ASL' that you could come here pre-diagnosis for support.
Just fell over and had a huge row with my parents. They say I did it for attention and that I'm enjoying doing this to myself. I have no one to talk to, I'm crying all the time and the top of my spine is burning. I feel completely confused and alone.
 
UKGIRL, you posted, "I'll go now." Well...?
 
banksm and UKGIRL... when the little green light goes off on the bottom left of your post... you're gone. Again, well...?
 
Anger issues? Abuse? Really?

Banksm, you do not have ALS - you have Guillain-barre syndrome. Scary? Yes indeed! Life altering? Without a doubt. Fatal? Thankfully, statistically not.

I just re-read your entire thread - everyone was supportive.

You are correct - we are not prone to providing sympathy for posters who ignore the obvious and embellish stories - but as you should well know - we are indeed a sympathetic lot. In spite of our circumstances.

Please, don't be sad for me. Be sad for the physically healthy people who pop up here, from time to time, relinquishing their potential to benign and/or imaginary illnesses.
 
Uk girl -

Please, please see a therapist ASAP! Ask your parents to join you. They will need help to help you through this challenging time of your life.

I am certain your pain is real - but I have simply stated you do not have ALS - and I have mirrored your statements back to you. You should look about for a more appropriate forum to address your particular issues. This is an ALS site, not a pre-diagnosis way station for all illnesses.

Good luck to you.
 
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