Status
Not open for further replies.

Emz1985

Member
Joined
May 30, 2011
Messages
15
Reason
Learn about ALS
Country
AUS
State
Vic
City
Melbourne
Hi all,
Thanks for taking the time out to read my post, I guess I'l start from the beginning Im 26 and it all started with getting twitches and aching legs about 6months ago, from then my arm also felt weak and crapped alot and I started getting these twitch's in both my arms and legs more regulary sometimes I can see my muscle Rolling around under my skin, anyway thinking it was a lack in a vitamin or something I went to my local go he seemed concerned and ordered a whole heap off blood work ASAP and refered me straight away to a neurologist, the neuro confirmed weakness in legs arms and trunk, brisk reflexes in leg, spasticity in ankles/foot and babikins sign so he then ordered a NCV and emc and also a MRI of my brain, MRI came back normal, NCV was also normal, emc thing was abnormal, now I am awaiting muscle biopsy and possible genetic testing, he hasn't given me any signs a to what he thinks it is and as I'm not the most upfront/forward person I haven't really pushed for an answer so was hoping to get an idea from here? He did say I had alot of upper motor neuron signs but I have no idea what that means, as it's been 6months from my first appointment about this to my gp my symptoms seem to be worsingin I am now unable to work as I can no longer stand for periods of time, I can not bend over to touch toes or squat or go from sitting to standing position without holding on to something overall the twitches seem to have also become more noticeable and are now also in my lower back snd neck/face. Any advice on what to do or what it may be would be a great help? And is it als?
 
EMZ,

I'd really suggest you be more assertive in your care--they've done a lot of tests that should have shed some light on a diagnosis. I think you really should call the neuro and make an appt to see what he's found. I realize there is still one more test that he wants to do--but if you're here, you're obviously concerned about ALS. Maybe take a spouse or parent with you when you go back to ask the questions you might be afraid to ask?

Please remember, ALS has several 'mimic' conditions--things that look like AlS in early stages. MMN, and CIDP come to mind-- don't try to scare yourself by searching for the answer. It won't do anything helpful for you.

With those symptoms--most here would say "See your doctor" -- which you've already done. Others might have some suggested questions you might want to ask the neurologist--or the GP if the neuro has forwarded his findings back to the GP.

Edit to add: If you have specific questions or concerns--this is generally a friendly group. You'll find a lot of support here should you find you need it. My thoughts are with you--I know waiting for answers is hard.
 
I agree with notme...

be assertive and demand answers from your doctor he works for you remember. If you don't trust his thinking then ask for a refural to a Nurologist.
I am sure your doctor has already run the tests but make sure he has checked for Lyme disease, and heavy metal poisoning.

You are always entitiled to a second opinion and it's your health nobody is going to do it for you. We had to be very stern with our doctor going back almost weekly before we got my dad's diagnosis.
 
Thanks for the replies, yea they done a blood test form lymes and all these other ones I think they even done one for a rare mosque bite thing lol, I am worried but I don't want to jump to any conclusions such as als and I dont won't to waste anyones time either. As for being more forward you guys are right I will call first thing tomorrow and ask what he thinks is going on ect. As I live 2hrs away from my neurologist and getting in and out of a car is well very challanging. As for taking someone with me my parents live in another state and I don't want to bother them just yet as I'm not sure what it is I will be bothering them for lol but I mite bring along one of my close friends Shea pretty outspoken so I'm sure if I don't ask the right questions she will. Also I don't no if this is a relevant symptom or something compelty different and I only noticed it before is when I went to sray deodorant my finger wasn't I guess u could say strong enough to press it down had to use too fingers, things like this I'm not to sure if I'm ment to be telling the docs or not? I'm not one of those people that has a cough and rushes to the docs thinking they have something more serious, so Im finding it hard wether I should be mentioning everything or just leave out the little things for the moment?
Thankx again for taking the time out to read and reply I'm sure you all have more important things to deal with so I am very grateful
 
***Two hands not to fingers
 
EMZ--

yes--tell the doctor all the symptoms--including needing to use more areas to push the can or whatever it was. Your neuro should have sent his result findings thus far to your GP. If not, he can fax them. I'm assuming your doctor is closer than the neuro is.

You said the EMG was abnormal--what was abnormal? Those are the kinds of things you need answers for. You're not wasting my time--I can't speak for anyone else here, of course.

Start with the GP--call the Neuro with the new symptom (which means you're having hand weakness) At least that's what I'd do.

My first symptom was I couldn't push the locks on my car door. -- and remember, I am NOT diagnosed with ALS--so it doesn't MEAN it's ALS--but it is more that needs to be added to the diagnostic mix.
 
Yea my doctors only 30mins away, I've never has to deal with so many doctors appointments and neurologist before and I have a funny feeling this is just the start if it, the EMG thats were I got these needles inserted into my muscles then told to flex came back as having signs of myopathy which I donr have a clue what that means. I'm thinking about maybe getting a walker or something to help me walk (not a great look for a 26year old) but I'm over tripping over myself cuz once I fall its a struggle to stand back up just for the mean timd anyway till they can fix me fingers cross, also does anyone no off any good reliable information concerning nuero or muscular disease/disorder. Every one on here sounds so well educated in these things so thinking I should do a bit of homework myself
 
HI

I'm not expert--look for posts by Wright--but I believe finding myopathy is why they want the muscle biopsy. They are looking for the REASON for the myopathy.

If it's any help--and don't take this as gospel--I think myopathy points AWAY from ALS. ALS affects the nerves--which causes the muscle to eventually die--in simple terms. Myopathy is a different animal entirely--dysfunction within the muscle itself. There are a host of possible causes. The biopsy will yield some answers, I'd imagine.

Let us know what they find out.

Edited to add: By all means use whatever means necessary to keep yourself from falling. With weak arms, I'd imagine it IS hard to get back up again. Let's try to avoid falling in the first place :)
 
Last edited:
Wow thanks everyone I have learnt alot tonight, I'm off to get done sleep have some calls to make tomrow will update once I get the biopsy results,
Thanks again
:)
 
It's great to have a sane person, answering and listening.

It's good that your neurologist is obviously switched on and doing a fine job od trying to diagnose your issues. There are myopathies that have genetic connections, so I guess your neurologist is heading down that track due to your signs ,symptoms and test results. That certainly, at this stage is pointing away from ALS. Which is good. It's actually hard for neurologists to really answer," what's going on", until they have completed the detective work! Your neurologist will be waiting for the results of the muscle biopsies before fitting that part of the puzzle together.

Giving the Doctor a ring, to get your questions answered is a good idea. It's nice to get a feeling for which direction he is heading in. It's also a good idea to take someone along to your appointments. I just sit and stare and lack assertiveness, but now I take my husband along. I work with MS patients and they sometimes come along with eels or friends, which I find most helpful, as I get better and more honest answers to my questions

Best of luck aly
 
Just thort I would update called neurologist this morning and asked in his medical opinion what he thinks it could be, he said his not 100% sure but said he is looking at: motor neuron disease, spinal muscular atrophy, heratiatory spastic paraplegia and there was another one but I forgot. He also thinks maybe it could be genetic as my dads cousin is in a wheelchair and cant really move because of muscle wasting. Even though there all not that great to have I do feel better that atleast he is doing his job and looking at everything and Im very greatful to have a nice neurologist I have heard some lack the bed side manners.

Question: is there a difference between motor neuron disease and ALS?
And also can it heratiatory?
 
Yes--it can be genetic--but myopathy isn't necessarily a bad thing as it tends to point toward something muscular rather than MND. Wait for your muscle biopsy--that will garner you more answers, I'd imagine.

But--if your uncle had had ALS to the point of being wheelchair bound--he'd have been diagnosed. Also--genetic type is usually from parent to child.

Try to be patient and wait for the muscle biopsy and other testing to come back. Keep your mind off worse-case-scenarios
 
Just thort I would update called neurologist this morning and asked in his medical opinion what he thinks it could be, he said his not 100% sure but said he is looking at: motor neuron disease, spinal muscular atrophy, heratiatory spastic paraplegia and there was another one but I forgot. He also thinks maybe it could be genetic as my dads cousin is in a wheelchair and cant really move because of muscle wasting. Even though there all not that great to have I do feel better that atleast he is doing his job and looking at everything and Im very greatful to have a nice neurologist I have heard some lack the bed side manners.

Question: is there a difference between motor neuron disease and ALS?
And also can it heratiatory?
 
Question: is there a difference between motor neuron disease and ALS?

ALS is a specific form of motor neuron disease, just like beef is a specific form of meat.

And also can it heratiatory?

Approximately 10 percent of ALS cases are familial -- two or more blood relatives (shared ancestry) having been diagnosed with ALS.
 
Crap I post the same thing twice sorry :) also does anyone have trouble telling people what's going on? My friend doesn't seem to think I am taking everything seriously asvi tend to either smoky or laugh in a bad or sad situation, but I'm not real sure on how I'm ment to act, I'm not to sure if my dads cousin has been diagnosed as we have never meet I might try and find out
 
Status
Not open for further replies.
Back
Top