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whoknows

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Feb 22, 2013
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Learn about ALS
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UK
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London
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London
Hi guys.
I'd just like to start with saying that I have read through the stickies, and completely understand your frustrations and commend you all for offering people like me sage reassurance whilst your experiencing such a difficult time. I'd also like to state that I do not claim to have ALS, to be honest, after months upon months of Internet search, reading medical documents and books, I still feel no where near closer to a diagnosis. You're probably thinking 'why didn't he go to the doctors?' But I have been on various occasions for various symptoms, and am currently awaiting a referral to a gastroenterologist.

I will lay it out, and admit that I do tend toward the 'hypochondriac' behaviour. I will concede that anxiety has and is playing a role in my symptoms. However, I know that it isn't the sole cause, as certain symptoms have been identified as due to a condition. I initially feared having a neurological disorder (well actually it was MS) due to muscle twitches and tingles, loss of balance, muscle weakness (which I think is perceived from what I'm reading here, but I do actually shake?). I later found that these symptoms - particularly the peripheral neuropathy - to be down to a vitamin b12 deficiency (hence the gastro referral).

However, these don't encompass the extent of my symptoms. So, here are the questions I pose to you all, in hopes that some can find the time to reply :). Please forgive me if some of my questions could be easily answered with a bit more research, or if I come off really naive - I just haven't looked into ALS much, and I feel that personal experience is more valuable than a generic web page.

I'm just going to explain some symptoms which I have been unable to correlate with any of the suspected illnesses I've wondered if I had. I have been getting blurred vision in one eye (the left). It is pretty transient, probably 30 minutes tops. Then there's these other weird sensations. I get this pain usually somewhere in the lower half of my body, like my foot or leg (I haven't taken enough notice to see if it is bilateral or not) which is then followed by a WEIRD tingling/crawling in my upper body, usually around my neck. Like I stated earlier I have peripheral neuropathy and these tingles are different to what I experience from that. It's quite a horrible sensation to be honest.

I also get this heavy feeling in my forearm from time to time. And it feels as though something is inflamed but I dunno what it is? It's like a vein or something? Lol! You can't see it but you can feel that it's hard. & when I'm laying in bed at night, eyes shut, I sometimes get this feeling which is really hard to describe, but I guess it's as if I'm dropping? It's pretty brief but not pleasant.

Finally, I was wondering what are the effects of ALS on the skin (if any)? & is there any link between it and joint pain/clicking?

Wow, this is long winded, well done if you made it this far! :D if anyone gets a chance to reply I'd be eternally grateful. My best wishes to you all. You're all such inspirational people :)
 
Sorry to double post (can't figure out how to edit), I forgot to put in, about my weird symptoms, I'm basically asking if these are related to ALS in anyway.
 
ALS does not tingle. Phew, you don't have it!

My joints don't click, though they do get stiff. But stiffness, for me, was absolutely not an early symptom. Loss of dexterity, clinical weakness and atrophy sent me to the doctor a year after first symptom. Typically, it starts in one limb, not all over like you describe.

Maybe you should see your doctor for an assessment.
 
Thanks for the reply Elaine :) I do now believe I don't have it. Can I ask though, if you've had any effects on the skin? This isn't about me worrying, I've just accumulated a lot of knowledge over the past few years from research, and am interested in learning more about ALS.
 
No skin issues... Except I have more of it. I gained a ton of weight from stress eating since diagnoses.
 
You'll be glad to know that not one thing you posted even remotely resembles ALS. See your Gp for an assessment and put ALS out of your mind.
It never, ever affects the skin--or sensory nerves. Or the joints. You don't have to even consider ALS on the radar.
 
Thank you both again. But like I said the skin was just something I was curious about, not anything that has been affecting me in any way. I do believe that it isn't ALS, but I do just have a few more symptoms which have been making me think ALS again. I'm sorry for being so ridiculous ('cause I know I probably am) but I just can't quash this last bit of doubt. I have difficulty swallowing, but I've read that this starts with liquids usually? Am I correct in thinking this?

But I'm also worried that sometimes I'm unable to pronounce words properly. For example, I was discussing stretch marks with a friend and it came out as 'stre mar' I know I'm probably being silly, and I am going to the doc again because I want some sort of diagnosis, but I have to wait around and my mind is just going a bit crazy about it all tbh. But again thanks for the assurance.
 
Thin liquids first.

Speech issues are generally pointed out by friends or family members before Being noticed by PALS
 
It was pointed out by my friend lol. Although I did notice myself..
 
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