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worrywartken

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Well I have a feeling this is going to be a little long...sorry.....anyway I had a brother that was adopted out so I never really knew him....decided to try and find him later in life and did and found out he died from ALS....well being the worry wart I am that kinda freaked me out.....6 months went by and one day my calfs started hurting really bad so of course I did the worse thing I could have and looked it up on the Internet and it went straight to ALS....well then I went into the worst panic mode ever....I was so stressed out I started getting back spasms muscle twitches widespread....my tongue started hurting like it was burned...well its been 5 years later and I still have all the symptoms even the burning tongue. ...what's weird is my uvula looks longer and curls up when I breathe...sinuses have been screwed up for a couple years...have dry mouth I guess from sleeping with my mouth open.....my question is after 5 years would things be worse if it was ALS and as far as it being hereditary he's the only one that I know of on both sides of the family I know of....haven't been to the dr. because I know me and if I had it I would probably go into deep depression and that would be it......sorry. for the long letter....just wanted to know about the heredity thing and having it for 5 years
 

worrywartken

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Sorry to write again but I guess I should have mentioned on and off again finger, ankle, and elbow pain...seems like hand gets tired after using it but it's been like that for 4 years....don't see atrophy anywhere but not sure what I looked like 5 years ago
 

ottawa girl

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After 5 years? Yes - if you had ALS, I believe things would be very very bad. Generally, our prognosis is 2-5 years. Some neuros say 3-6 years.

But - see your doctor. Many things can cause sore calf muscles. Maybe you just need a good physical to get all of your concerns addressed. When's the last time you had one?
 

worrywartken

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It's been awhile since I've had a complete physical but went to the Dr for a few blood tests like thyroid which I thought was high but he didn't a few months ago....I told him about the muscle twitches still happening and he didn't seemed concerned at all which I thought was a little weird...If I use my arm like picking things up it twitches and sometimes my elbow really itches afterwards.....try telling a Dr that he just laughs and walks off...I went to the Dr a lot when it first started happening and everyone thought I was crazy so I just quit going..I guess the thing that bothers me the most is the tongue, uvula and sometimes things get stuck half way down when I swallow like licorice. ..lol....who knows maybe I'm thinking about it to much when I swallow.....time will tell I guess....thanks for answering back...
 

worrywartken

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It's been awhile since I've had a complete physical but went to the Dr for a few blood tests like thyroid which I thought was high but he didn't a few months ago....I told him about the muscle twitches still happening and he didn't seemed concerned at all which I thought was a little weird...If I use my arm like picking things up it twitches and sometimes my elbow really itches afterwards.....try telling a Dr that he just laughs and walks off...I went to the Dr a lot when it first started happening and everyone thought I was crazy so I just quit going..I guess the thing that bothers me the most is the tongue, uvula and sometimes things get stuck half way down when I swallow like licorice. ..lol....who knows maybe I'm thinking about it to much when I swallow.....time will tell I guess....thanks for answering back...
 

worrywartken

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So I guess to condense it all down my questions would be after 5 years of muscle twitching and joint pain and the symptoms I mentioned above with no atrophy that I can see still be Als and second could it still be hereditary without both sides of parents having it or any of their brothers or sisters....sorry to keep writing and sounding like a knucklehead. , and sorry for posting last message twice...didn't know how to delete it.....thanks for any input. ...
 

dynamix

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After five years, unless you are one of the very rare cases, you would be seeing more noticeable complications by now. Complete loss of at least one or more limbs. If not that, certainly far more difficulty in day-to-day activities involving the bulbar region (speech, swallowing, respiration).

My father's very first symptoms, even before diagnosis, came on about 3.5 years ago. A drop foot and some trouble with normal walking gait. By now, he has lost all use of his legs, most use of his arms (except his fingers) and now having difficulty with speech and breathing. So, for you to be at 5 years with no major progression, does not seem to describe ALS.

Familial ALS (as it's known, as opposed to hereditary) is very rare. Even still, you would need to have at least one parent with a gene mutation, in addition to your sibling, that has caused ALS. Not showing a symptom or two, but actual diagnosis.

Are either or both of your parents still living?
 

CGARS

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You've posted 4 times in 4 hours.
You seem pretty worried.
Question:
Have you called your Dr. for an appointment yet?
 

worrywartken

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My dad is still alive and is 97 ..my mom died a few years back at 84...my dad's parents both died at 96 and my grandparents brothers and sisters all lived to their 80's...my mom's side as far as parents died young in a car crash but as far as I know all of her brothers and sisters lived into their 80's also...they live in West Virginia so I'm not positive...my brother that was adopted out for some strange reason is the only one I know of that got ALS...but since I have a lot of symptoms I'm just a little concerned how it all works...I have weird sinus problems that make me sound nasally and like I said sometimes when I swallow it seems to only go down half way...not all the time...The uvula thing has me a little nervous but maybe I'm getting old and falling apart. .
 

dynamix

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I assume from your note that your mother was not diagnosed with ALS before her passing. If that is the case, and unless your father presents ALS symptoms, it is unlikely that your parents passed along a gene mutation to you and your brother. Of course we can't be sure, but this would indicate your brother may have had some environmental cause for his ALS as opposed to an inherited genetic defect.
 

affected

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Honestly, just go to a doc tor and get it sorted.

We are not doctors and we can't answer any of this in reality. 5 years and you won't see a doctor but tell us instead?

ALS seems about the most unlikely of causes. I hope you get this solved, but you need medical help, not posting here.

All the best
 

worrywartken

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I appreciate your answer Patrick. ..I was just looking for some input on the subject from someone that was a lot more knowledgeable than me...Thank you for being kind and not blasting me..
 

olly

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Honestly als does not start like that and after 5yrs there would be signs no doctor could miss plus you sound pretty able bodied.
Seems all your symptoms started after finding out about your adopted brother.......sounds like anxiety and I am sure your fine but you can always see a neurologist for a second opinion.
 

worrywartken

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Thanks olly....it definitely started a chain reaction of anxiety problems...I've just read so much on the Internet with all the different scenarios I've convinced myself I have it having most symptoms and a brother that had it...not having insurance at the moment makes it hard to run in to the neurologist. ...your answer made me feel better ..Thank you
 
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