Sorry to be that guy...

cakeyboy1991

New member
Joined
Jun 22, 2022
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
City
Belfast
Firstly, I'd like to start off by saying how much I truly respect all of the PALS and CALS who are present in this forum (those that have passed on as well) who contribute their knowledge of ALS onto others who may be struggling with symptoms, diagnoses, or just living with the disease. ALS seems to be such a heavy burden on everyone who encounters it in their lives. Thank you for being such selfless people - for free no less.

Unfortunately (everyone sighs) I am going to be one of those new(ish) members who asks for your reassurance now. I really hope I do not offend anyone with my request. I have read the stickies, and will try my best to adhere to the directions they set out. Apologies if I can not uphold this promise! lol Bit of an ADHD sufferer alongside the OCD traits. I am also a 30 y/o male with hypermobility.
To make things easy I shall bullet point all my health concerns into short and concise points. I am also a 30 y/o male with a 6 month sedentary period. Hypermobile too.

  • Upper arm fatigues fast (mostly right) - noticed whilst shampooing in shower
  • Slight atrophy in both hands and wrists, as well as, right buttock (again, mostly right sided) - scariest symptom
  • Weakness in forearms and hands (again, mostly right sided)
  • Easily fatigued legs (mostly right sided)
  • Slight trouble swallowing - feels like Adams apple is crunching every time I swallow
  • Twitches in right leg and arm - not constant. Always happens after a walk
  • Both pinky fingers feel stiff
  • Hyperreflexia - I can write this off as anxiety to be fair
  • Weight loss - probably anxiety too
  • Low pulse rate - Usually hovering around 53 or so these days
  • Dr suspects this involves my lower motor neurons which sounds worrying
I have been to two GPs in the past week, with one trip up to the A&E/ER. Two of them gave me referrals to the neurology department and the other decided to just take bloods upon hearing this. Hoping this will lead to an EMG or MRI scan so I can have some closure.

Again, sorry if this post is insulting to any PALS/CALS on this forum. I mean no disrespect in bringing my anxieties into your space. I just want either some reassurance, or clarity on what from what some of you think could be wrong with me.

For anyone reading this, thank you very much for taking the time to read through my anxiety-ridden blog post haha.
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,224
Reason
PALS
Diagnosis
08/2015
Country
US
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South
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The Beach
Hi,

Your symptoms are mixed. Really, there's nothing like an examination by a doctor to get to the bottom of things. I'm glad you're working with doctors. Nobody here is a doctor and every person with ALS or other motor neuron disease presents differently. Usually stiffness and brisk reflexes are connected with upper motor neurons so I'm perplexed why your doctor even mentioned LMN but, I'm sure, he had his reasons.

I think you're doing the right thing in letting a neurologist look you over. Remember, they are trained to detect clinical weakness as opposed to perceived weakness and a quick exam will uncover various things. Don't go in thinking ALS. Let the neurologist take the lead. You might want to bring your bulleted list to help.

I understand anxiety. I've had it most of my adult life and it does make everything seem worse.

I wish you good luck on your next exam. It's okay to report back with the findings. I hope you're cleared of anything serious.
 

lgelb

Moderator
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Nov 5, 2009
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11,186
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Lost a loved one
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WA
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Seattle
Not sure what you mean exactly by "hypermobility," but some of the connective tissue disorders that can include hypermobility can also entail a lot of what you report, including localized atrophy. So if your hypermobility is widespread and documented, I would certainly get evaluated by a medical geneticist if you haven't.

Best,
Laurie
 

cakeyboy1991

New member
Joined
Jun 22, 2022
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
City
Belfast
Hi Kim,

Well the doctor who told me this was working in the ER at the time so he was probably just going off his basic knowledge of the topic. He did however manage to get me an appointment with the hospital neurologist on Monday so I am feeling a bit more hopeful in finding out what is truly going on.

As I mentioned, I'm naturally a very panicky person who suffers from health anxiety so I automatically assume I have something like ALS. Yeh anxiety is just one of those things that seems to be a part of living in today's age! I try listening to the wise words of some modern gurus like Alan Watts or Ram Dass when I'm feeling anxious. I would recommend listening to either of them if you ever get the time. I'm not into Buddhism, but listening to how they describe their attachment to reality is truly very calming and inspiring.

Appreciate you taking the time to reply to my post Kim! Thank you.
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,224
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
I also listen to Ram Dass. I also listen to Richard Rohr. They both comfort me. I studied Buddhism for two years and it really helped, in many ways.

I really hope you get good news from the neurologist.
 
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