SOB, muscle twitches all over , weight loss,

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AmberJ1927

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Hi everyone !
I’m a 22 year old female so understanding young for this disease to be a potential but not impossible especially with that seems like respiratory onset.

About 3 months ago I went rowing and my arm was absolutely aching after an hour much more than used to be my muscles felt weaker in arm but I didn’t think much to it at the time , I was also becoming more constipated at this time.

Late august I woke up one day feeling like I couldn’t breathe properly, my breathing was more shallow than usual, after 10 days of this I went to emergency department where oxygen, bloods + ecg all came back clear. Fast forward to now I’ve have worsening shallow breathing everyday gets that bit worse over the last 10 weeks and I cannot laugh or yawn properly or take a deep breath at all, my respiratory rate is constantly high . I’ve also been waking up gasping and waking often in sleep and worry my breathing is too shallow in my sleep. The drs are putting down to anxiety at this point although they have said they’re odd symptoms and my family and friends are becoming increasingly concerned.

I also developed muscles twitches early September and also developed more mucus in my throat which then went away for a while and have now come back very severe in the last week all over my body , hands , legs , arms , belly and feet , I’ve also lost over a stone and lost my appetite and also finding swallowing more difficult.

About 2 weeks ago i also started producing more saliva in my mouth and feeling like I’m trying hard not to drool. I’ve also found that I get a tremor in my arm and find holding my phone for a long time makes me arm ache which never used to be a problem.

I’m still able to walk and talk but find breathing becomes severely shallow when doing so, 4 months ago I was the healthiest I’ve ever been gym x4 a week and running , now I can barely walk for 10 minutes without feeling like I can’t breathe.

The dr have now agreed for referral to respiratory team at hospital get me a spiometry see how well my lungs are actually functioning and from there maybe neurologist can be sped up and contacted. And I’m looking into getting a private emg but that will be a few weeks away and with my breathing just getting shallower I don’t know what else do to A+E can’t seem to help me but I’m at loss. I don’t want to believe it’s ALS perhaps it’s something less sinister but all my symptoms and lack of other tests findings points Me in this direction.

Any kinds words or guidance would be appreciated.

I also meant to add I spoke to a neurologist over the phone consultation I paid for and he said my symptoms seemed concerning and he recommended thorough physical exam which I have DR appointment on Thursday and he said to request referral for EMG NCS investigation to rule out sinister pathology.
 

Nikki J

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The spirometry should give you a lot of information. If you did have respiratory onset ALS ( rare 5% of all cases add the rarity of ALS at 22) it would show specific abnormalities. It will also check for much more common causes of breathing difficulties
 

AmberJ1927

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Thank you for your response Nikki I understand the rareness of it I just seem to have so many symptoms pointing me in this direction, I find that my breathing is especially shallow in my sleep and I can’t stay asleep too long due to this. I also have found since this happened I cannot laugh properly or yawn properly i can’t seem to draw the air in, I wonder if anyone else has experienced this phenomenon or if you know if it’s a symptom of other things. I also found yesterday i couldn’t use my left thumb it was weak when attempting to type and isn’t moving as used to. I’ll check back in after my spiometry many thanks.

Thinking of everyone fighting this terrible disease and their families.
 
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