Als frs

[mustard-seed]

Hello,

I am new to here. I've been told that I possibly have ALS. It isn't official yet - but the neuro said it's definitely a possibility. I started showing signs about 16 months ago. I'm seeing a specialist soon - in about 2 months.

Anyway... I did my ALSFRS with her, I've scored a 42 out of 48. Like I said, I first showed signs about 16 months ago. I'm 25 years old. Male.
Is this a good thing? or is this rather normal? she said it was good, but I'm sure people that actually have the disease can give me a better idea.
Seems silly that I'm worrying about ALSFRS when I don't even know if I have it - my neuro seems to think it's a strong possibility - I'm now overcome with sadness and anger - but it's not to say I didn't already know - I knew I had this months ago - now it's becoming more of a reality - scary!
anyway... if anyone can get back, that would be great...

 

[shelleynshaggy]

Not sure about what to tell you. - When they tested my husband they said he was at the "low end of normal" but there really wasn't a "normal" range for his age group and he was 35 at the time. I do not think it was the ALSFRS though. I have heard so many times "there is no normal range for your group" I could scream. Heard it through out the driving evaluation and neuro exam. I would see what the specialist says. We have an appointment at the ALS clinic in October. We too are hoping for clarification and real answers too. Best of luck to you. Stay positive.

 

[mustard-seed]

thanks for the response. god bless your husband. he's so young too. hopefully his progression is moderate.
I'm only asking because if an ALSFRS exists, there must be a reason for it - so much in the way of progression is based on this scale. So a 42, after 16 months, at age 25... just wanted to know if anyone had some insight.
thanks.

 

[whatsgoingon]

Hi mustartd-seed

May I ask you what your symptoms are and why your neuro says ALS is a possibility? Did you have an EMG done?

 

[rose]

Mustard-seed,

The ALSFRS is a useful tool for the medical community in measuring/predicting progression. I've also read that two more factors they feel have correlation to expected rate is the age of onset, and the ease of reaching a definite diagnosis.

Generally speaking the younger a person is when symptoms begin, the slower the progression, and also the longer it takes for diagnosis, the slower the progression.

There are many many conditions which can mimic ALS. Good advice would be make sure you are seen by a neurologist who specializes in neuromuscular and ALS, and to get second, and third opinions.

Good luck to you

 

[mustard-seed]

whatsgoingon: hey, thanks for the question. right now I have some atrophy, weakness, brisk reflexes, stiffness, muscle twitching (looks like it travels way and down limb) and even some breathing problems. so the neuro I saw is sending me to an MND specialist, whom I see in two months.

rose: yeah, i noticed symptoms about 16 months ago. I was 24 at the time. So I guess I'd be qualified as "young", though I don't know if "young" in MND means under 20 - as my neuro said it's a misconception that a lot of younger people don't get ALS, because apparently it seems that statistic is rising... anyway, she said that it could work 1 of 2 ways with a person my age and ALS - very slow progression or very fast, no in between - and clearly I'm not progressing at a fast rate.
as far as conditions that mimic als. I've had numerous blood tests, and MRI, CT Scan, urinalysis, etc. all of which came back totally fine.

 

[rose]

Mustard seed, even if your ana's etc are normal, there are also the tick borne diseases which often test negative at first, and mitochondrial disorders. However, some of the mitochondrials don't have a known treatment, and are notoriously hard to diagnose. So, its not like they are a walk in the park either. My point is that because you don't fit into the expected age group, don't accept it until its proven to you.

I would agree that your score indicates you have a slow progression, regardless of what is causing your weakness. I consider my own progress to be slow, the onset of my first (vague) symptoms was about three years ago, and I think my score was a 27 at last clinic visit.

You have noted your numerous tests coming back normal, but did not mention having an EMG, both the EMG and NCV are a significant part of the diagnostic process, have you had these done yet?

 

[mustard-seed]

rose, I'm glad that you consider your progression slow - I hope it stays that way.
and no, I haven't had an emg or nerve test - that's what I'll be getting from the specialist come november... i just saw the regular neuro for history of symptoms and the clinical stuff (atrophy, reflexes strength, balance etc.) stuff.

 

[lydia]

Mustard, I am so bothered that your neuro is telling you ALS is a strong possibility when that EMG could tell so much right away. I have learned that even if your symptoms point your neuro toward ALS (as mine did, initially) the EMG can remove that possibility very quickly (as mine did, fortunately). To have this much conversation or speculation about ALS without having the EMG seems so odd. Why wouldn't the neuro just schedule that when he/she scheduled all the other tests? Two months is a long time to wait to find out what is going on! (well, I mean that relatively speaking. Many of us here have been waiting a really long time-years-to find out what is going on with us but fortunately EMGs at least quickly eliminated ALS from the list of possibilities).

What is going on with your breathing?

Lydia

 

[MtPockets]

Re: ALS frs

Without and EMG or NCV they are shooting in the dark to even suggest ALS. That borders on incompetent. Then there is the spinal tap, muscle biopsy, it goes on and on before the words ALS should come out of anyone's mouth.
My ALS FRS is currently 19.

 

[seattle86]

Hey mustard-seed, what was the first symptom that you observed? You named a few right now, but I was wondering what was the first, and when did you first seek help.

 

[hopingforcure]

Mustard,
I would think that you could get in for an emg sooner, if you would call and explain the situation. I believe that a ALS doc would even want an emg before they even were talking als. You have so many things to eliminate, and that is the first thing to do. I can telll you that a local neuro can mis diagnosed. and most do not even get ALS diagnosed when we have it..

 

[Zaphoon]

I love EMG's! Stick me baby! Do it again and again! I can't wait for the next one, should it come!

I think they need to crank up the voltage for everyone on the NCV test. My! Those big jolts are just so invigorating!

As you can tell, I'm not much for those low voltage, panzy of a tingle things. No sir! Make me flop like a fish out of water and hit me hard!

Zaphoon

 

[MtPockets]

You would love my old tens unit. Put the pads across a leg or arm muscle and shock it . Jumps like a bull frog.

 

[greedy21]

what you guys think?

mine started as a back ache and felt like it was hard to run---im a runner----back ache for a month, then twitches in body and even in tongue sometimes----i know these can be benign, but the worrisome part is my face muscles are weak already----when i smile, shakes under my eye and cheek etc---feels like they are tired etc----forearms sore----i have a 5 month old and chalked it up to this-----didnt have trouble talking or walking and holding things until i read about that, then i seem to be having a lil trouble, but not sure if its perceived----feel like tongue is fat or not enough room in my mouth, not sure if thats perceived---totally stressed and sleep deprived for 5 months and going to see neurologist this am and cat scan for 1230----gp chalks it up to being a new mom and anxiety and gave me anti-dep yesterday-----im fin beyond scared and am sure this is als and my kids will be without me---i have a 2 1/2 year old son too-----im scared shitless, anything u can say, any comfort, any smiles would be appreciated