Sorry to be that guy...

[cakeyboy1991]

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]

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]

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]

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]

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.

 

[cakeyboy1991]

Hey lgelb,

Apologies for taking so long to reply. I am not a paying member so I had to wait a while to post again. Then I just forgot!
Ironically I am back looking for reassurance as many other hypochondriacs here are. My employer actually offers genetic testing with our benefits so I may do this. Hopefully it won't leave me with more anxiety than before haha.

Thank you taking the time to respond. It's great that people like yourself and those suffering from MND are able to help people who most likely don't deserve it. Much respect.

 

[cakeyboy1991]

Hello all,

I'm going to make this super brief as I have posted once before and didn't plan on writing another.
I'm a 30y/o male who is currently waiting to be tested with an EMG and spinal MRI due to some ongoing neuro symptoms, but the wait is going to take forever due to the UK health service being under a lot of pressure currently.

Can someone just tell me if my symptoms raise any red flags?

• Upper arms fatigue fast
• Atrophy (no clinical weakness) in left foot arch, left hand also shrunken
• Burning feeling in feet (mostly left and after walking)
• Twitching - almost constant in left foot and thigh. Body wide twitches also occur
• Easily fatigued legs (thighs mostly)
• Bilateral Hyperreflexia discovered by doctor
• Trouble swallowing - tight throat
• Nasal regurgitation - very slight but noticeable
• General fatigue but can still exercise (for short periods of time)

Apologies for making another thread. I'm just very anxious with waiting to find out what is going on in my body. Appreciate the responses shown by PALS and CALS on this forum. Many of them have helped me when I'm having a panic attack.

Thanks,
Chris

 

[lgelb]

Symptoms cannot be considered in isolation. This list could have thousands of causes, and often more than one. And there may be no grand explanation. I can only say that ALS generally doesn't present in the diffuse fashion that you describe, esp. without clinical weakness (not the same as general fatigue or shorter exercise duration) and it all sounds potentially systemic rather than neurologic. It isn't clear whether the atrophy has been categorized as clinical, either. Hyperreflexia often waxes and wanes, can correlate with anxiety, and is not any kind of red flag in itself.

While you await testing, I would work on things like enough refreshing sleep and your positioning/posture in work, play, and sleep.