whats criteria is needed for an ALS diagnosis exactly?

Status
Not open for further replies.

PamP

Member
Joined
Dec 7, 2020
Messages
10
Reason
Learn about ALS
Diagnosis
00/0000
Country
NL
State
AM
City
AMS
Hi, to keep it brief! 44 yr old mum of two very young kids with twitching down one leg and bum for a few months, had an accident falling down our stairs on bum heavily 8 months ago, twitches seem to be at site of accident and radiating. I notice a loss of muscle mass at back of right thigh also. Had EMG (needle tests), was negative,the right leg made no "noise" on the machine, the left leg did. this worries me as no noise is not good apparently? is muscle weakness needed for diagnosis? I get twitches occasionally elsewhere but not as much as the injury site. i definitely feel the muscle is smaller on the right leg that the left but only the orthopedist has noticed this?

i dont have any movement issues yet, just shrinking muscle and lots of twitches.

The orthopoedic surgeon has offered a bone scan to check nothing else is going on, but if i were to have ALS, as its such a high radiation scan, could this be damaging to my nerves even more. I know it can take a 'long' time to get a diagnoses of ALS...

my other worry is metastatic melanoma as heard this also causes twitching ( as well as other types of cancers) I had a strange lesion a few years back on my shoulder but it went away, though nothing more of it till now...just dont know what to do anymore...finding it hard to be a good mum as cant concentrate on anything else...


Thankyou for your precious time...
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,321
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
The criteria for an ALS diagnosis are upper motor neurons signs on exam ( hyperreflexia alone would not count but abnormal reflexes and spasticity etc) AND an abnormal emg in a widespread area covering more than one nerve root in a specific pattern showing acute and chronic denervation There also need to be tests to rule out other causes of the findings. Clinical Weakness is the hallmark finding for lower motor neuron disease along with the emg.

a bad fall as you describe makes me think you irritated nerves that are causing the twitching. ALS is a disease of the motor neurons not a nerve disease.
 

PamP

Member
Joined
Dec 7, 2020
Messages
10
Reason
Learn about ALS
Diagnosis
00/0000
Country
NL
State
AM
City
AMS
ok, thankyou. My worry is that i read a study that says a damaged nerve can trigger ALS in people that have high glutamate (ie from stress) and certain genes for eg. SOD1 gene as well as many others they are now discovering...the twitching didnt start right away after the injury 8 months ago, only recently. it reads that the ALS will start at the site of injury and spread out from there...anyone have any knowledge of this?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,321
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
No. Please cite the study
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,321
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Never mind I found it and the comment from ALS expert Dr Appel
Dr. Stanley H. Appel, chair of the Stanley H. Appel department of neurology and the Peggy and Gary Edwards distinguished chair in ALS at Houston Methodist Hospital, praised the research but emphasized that the findings show only that a nerve injury may exacerbate disease progression in animals that already have ALS.

“What it’s saying is that if you have trauma in a peripheral nerve it’s going to make your ALS worse not only in the [region] where the trauma was, but in a broader distribution that will spread,” Appel, who is also the co-director of the Houston Methodist Neurological Institute, told Healthline. “There is no evidence that injury triggers ALS.”

Appel said that the genetically engineered rats in the Illinois study would have developed ALS whether they had been injured or not.
 

PamP

Member
Joined
Dec 7, 2020
Messages
10
Reason
Learn about ALS
Diagnosis
00/0000
Country
NL
State
AM
City
AMS
here we are, found it...it says .."peripheral nerve injury can "trigger and initiate" the onset and spread of the disease in an animal model of ALS.


 
Last edited:

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,321
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
And see my comment above. You don’t have ALS to be made worse by the injury unlike these rats. The emg proved it. PALS have long known injuries makes us worse. Hence the constant harping on maintaining safety.
 

PamP

Member
Joined
Dec 7, 2020
Messages
10
Reason
Learn about ALS
Diagnosis
00/0000
Country
NL
State
AM
City
AMS
so if id had it before the fall, do you think it definitely would show on the Emg and would they 'not' tell me yet and wait to see if i end up going back with weakness at at later date, as they need certain criteria to diagnose?..None of the other doctors seem to be able to tell me why my butt / leg muscle is wasting away and why i have the muscle fasciculations...iv'e had Mri's and still haven't been given any diagnoses, i'm so frustrated. Perhaps i should have the bone scan after all....
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,321
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
It is unethical to lie to a patient so if your emg showed ALS like pattern yes they would tell you. Ditto exam findings that indicate ALS or any other diagnosis.
if your doctor is recommending a test to help diagnose your issue then you should strongly consider it. It is fair to ask what information they are looking for if you don’t already know. But if you want answers you need to be willing to have tests. You had a normal emg which ruled out ALS and other things. Instead of focusing on something ruled out you need to work with your doctor to find out what is wrong
 

PamP

Member
Joined
Dec 7, 2020
Messages
10
Reason
Learn about ALS
Diagnosis
00/0000
Country
NL
State
AM
City
AMS
yes, thankyou so much Nikki for listening, my doctor doesn't think i should have the bone scan ...that its 'not needed', but at the same time none of them are offering a diagnosis either. The orthopoedic surgeon also says its "up to me", doesn't think i need i. Im British and i find the doctors here in Holland so blaze.. thanks for your time again, keep up the good work!
 

PamP

Member
Joined
Dec 7, 2020
Messages
10
Reason
Learn about ALS
Diagnosis
00/0000
Country
NL
State
AM
City
AMS
Hi, im new here, not diagnosed officially, but am in my mid 40's, a stressed mum of 2 young kids. I started to get fasciculations months ago, after i noticed fat disappearing over my right hipand lower back, then my muscles on my bum and back of right leg started to feel smaller/thinner. I went for and Emg, which they said it was normal. But i had a previous Mri to hand from november ( different reason) which i relooked at and can see muscle is smaller on right leg for sure.

They didnt do Mris along with my emg to look at my muscles...but i got severe pain in my bum and down the back of my right leg after rollerblading the other week.

I've never had muscle twitching ever, and I've had some very stressfull periods in life!

I also noticed that when they did the emg, the right leg made no 'noise' when flexed on the machine?

Is it possible i had an abnormal finding but they wont tell me untill i actually show physical weakness?

Ive become very depressed and upset over the whole thing and am wondering if my doctors might be hiding it from me till they're sure and i have all the symptoms and tick all the boxes as it were!

The twitches have become more regular and are all the time now, mostly right leg but also in various places, abdomen, left eyebrow twitches constantly for months! Arms....plus i feel my right leg is wasting way.

Few months ago i had intense pain across my shoulder blade area too...

(mod note- moved to own thread from someone else's)
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
9,955
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
As Nikki says, you have the right to the full EMG report but I could not imagine their rolling the dice to lie to you (why?) If the orthopedist thinks a bone scan might reveal some important information, I cannot see why you would not, unless you do not trust them at all, in which case perhaps you could ask for referral to another.

Essentially, you haven't presented a picture of ALS -- which is a wonderful thing.
 

PamP

Member
Joined
Dec 7, 2020
Messages
10
Reason
Learn about ALS
Diagnosis
00/0000
Country
NL
State
AM
City
AMS
Well the odd thing is, my doctors dont think i need it, they're only offering it as i keep persisting trying to find out whats wrong as i havent been given any answers, plus its a big dose of radiation and if it turns out i do have very very early ALS, would it damage the nerves/muscles even more. Im in the Netherlands, maybe docs here have different protocols on what they tell, dont know, but the emg was done by Leonard Van Den Berg, whos pretty big in the field of ALS im told. But they won't diagnose Als till all boxes are ticked.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,321
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
If Professor van der Berg did your emg and told you no ALS then you should believe him. correct they won’t diagnose ALS unless you meet the criteria. That is true here too. I am sorry you don’t trust Dutch doctors. There really isn’t much we can tell you since you don’t trust us either
 

PamP

Member
Joined
Dec 7, 2020
Messages
10
Reason
Learn about ALS
Diagnosis
00/0000
Country
NL
State
AM
City
AMS
Surely they would say there's a "possibility" rather than a definitive no...or do i really have to wait till i cant lift my right leg or something. What im trying also to find out is if a high radioactive scan would be bad if i were to have Als, does anyone know? I havent said i dont trust people on here? But yes, i have had a hard time with the dutch 'Gp''s...
 
Status
Not open for further replies.
Top