Is it ALS ?

[Monkeymind]

Hi there!

I would like to share my story because I am scared to death of my condition.

All starter in December after intensive trainings (aerobic , stressing mainly the shoulders). Then I felt weakness in my right hand and pain in the thumb. So, I decided it’s of the sport and stopped for a while, but still did some light trainings. In March I visited orthopedic and he said that i have trauma to my wrist. They gave me orthesis which I wore 40 days. Thinking my problem is the wrist I did some sport keeping the wrist. After 40 days passed the doctor said ”do some physioterapy and you will be fine” I wasn’t able to move my thumb at and later I get a little better, but really a little. There is an atrophy on my palm and the back side of my shoulder. I had fasciculations but not all the time only in hands (both) .

In August I visited neurologist and he said that I have braxial plexus injury. Then I entered in hospital for tests. EMG showing both hands ulnaris damage and medianus on right. Fibrillations and fasciculations. Atrophy in both shoulder ( that atrophy which is typical for plexus) . Legs are fine but with fasciculations. They did spinal tap, blood tests , computer tomography on neck, Lyme disease test all results are fine. So no reason for the nerve damage so far if we exclude the sport.

Interesting thing after the spinal tab I have some pain in back and in legs. During the procedure they hitted twice my nerves on the right side and on the left, since then i feel something in my legs. I am wondering could it be ALS or it’s just braxial plexus on both hands due to intensive workouts.

Two weeks before entering the hospital the fasciculations were gone , but due to the stress or something else now I got them everywhere in my body(chin, nose, lips, forehead, legs, arms, back, neck and etc.) And these keeps me very nervous. All I think is that I have ALS. The fasciculations are less in the morning when I wake up and in the nights when I feel sleepy , during the day when I work they are driving me crazy. Also when I am tired after some brain activity they are less .

These days I am about to do MRI scan but waiting the doctors to say which part of my body to scan in order to exclude ALS. Currently my right hand is better than before when I putted down the orthesis , but still in bad condition. My left hand has weakness due to ulnaris damage. So there are some progression of the conditions but there is some recovery. Next month I‘ll visit the doctor (3 months after I visited the hospital) for a tests again but I am devastated, scared, sad , the anxiety is my life now. Don’t want to stress you but I even have thoughs for s…e if its ALS.

 

[lgelb]

If you could post the deidentified EMG report, we could be more helpful. But from what you’ve said, I’m not concerned about ALS. It sounds like an injury is indeed possible.

 

[Monkeymind]

Good morning.

I really apretiate your answer, sir!

The EMG report is 12 pages and it is in my native language, so probably you will not understand it. Anyway there is a page of summary information, so I will upload it . I checked it real quick and I saw in columns “no fasciculations” repeated several time in different muscles and I’am so sad for that time when I had no facs.

The second image is summary , probably most important elements. I do not know. The first is something called QEMG and the info in the columns are all ”no” or “normal”. It’s on right hand.

This is the EMG before entering in the hospital. They did another which is in the paper work when you leave the hospital (that final document don’t know it how it’s called in English).

What would you suggest to scan on MRI , I am still waiting for the respond of the doctors in the hospital where I was. I have appointment for MRI today but will miss it because I am waiting the doc to answers what to scan.



I would like to apologise for my writing it’s not my native language, so probably I make some mistakes.

 

[Nikki J]

The Qemg is the important thing for ALS If that was normal then your tests did not point to ALS. It seems that whatever they saw it was on the nerve conduction portion of the exam which is represented in your second image which means your problem is something else.

We can not recommend what to image. If you need an mri it would be up to the ordering doctor to decide based on your ncs and clinical history and exam. The MRI is not to exclude ALS. The qemg did that.

 

[Monkeymind]

Hi there!

An update of condition, for those who expirience similar symptoms to mine. I was checked again in hospital. All blood test are fine , only CK was elevated to 300 but it was after needle EMG, so doctors said this could be the reason. Last time when I checked it was 198 - I think it’s high . They did spirometry - said that it’s very good. EMG in hand is with no change in the condition compared to 3 month ago- I feel some improve but EMG doesn’t confirms it. Fasciculations in legs with no any finding. Last three months I am experiencing severe fasciculations all day long. No any additional atrophy in last 3 months I do some regular measurements on hands and legs. So, doctor said probably it’s cramp fasciculations syndrome but why I have damaged nerves in hands its still unclear. They want to check me after 6 months again. They don’t want to make MRI and say it’s not necessary for now. So I am bit calm but still anxious about it. How is possible to have nerve damage , and no clue What caused it. No clear medical evidence for ALS but to be checked again. It’s almost year since first symptoms, isn't enough time to be ruled out? And just to ask what are CK levels in ALS? If CK was normal I would be very calm but now when it’s not I am concerned .

 

[Nikki J]

Depends on the lab but that is usually a normal cpk level. And lab values are determined on a bell curve so there are always healthy outliers. It also trends higher in males and muscular people. There is no reason to associate it with ALS. Again your emg was normal. The nerve damage whatever it is has nothing to do with als.

 

[Monkeymind]

Hi Nikki J.

I really appreciate your answer and given time !

What more to say, as everyone else I am scared that everything can change in the last moment and to be confirmed the diagnosis of ALS. I can’t image how I will feel and really symphatize and admire to those who fight this condition.

They are very brave and strong and wish them all the happiness and love on the world and hope that someone can eventually win the race and be the first recovered of the condition. I will update my condition in 6 months after additional examinations.

Wish you all the best again and even early - happy cristmas and new year holidays. God bless you!

 

[Monkeymind]

Hi again!

I would like to ask does the EMG studie shows upper or lower motor neuron damage/lession? My EMG is with abnormalities, prolonged F waves , fibrilations , fasciculations, cramps. So I wonder aren’t these findings part of umn or lmn? If so there is significant chance of MND ( not ALS but MND) but why the doctor would not tell me if it’s related. That is why I am asking does the EMG shows UMN or LMN damage/lession.

 

[Nikki J]

You stated your emg had no or normal on all the columns. Now you say it showed fibrillations and fasciculations. Cramps are not reported on an emg. F waves are or ncs. Even if your emg showed fasciculations and fibrillation s without other findings it doesn’t mean mnd

Upper motor neuron findings are really found on the clinical exam. The emg is for lower motor findings. Were you told you had upper motor neuron findings when the doctor examined you? Als needs both upper and lower findings but there are several reason for an isolated umn syndrome

 

[Monkeymind]

Yep, the columns of QEMG are no or normal. But there are fasc and fibrillations in the report. I am confused already. They just tell me that it is not ALS for now , but didn’t know what it is. Also said probably is cramp fasciculation syndrome but still unclear what did the damage to my hands. Said see you in 6 months then probably we will know more. They suggested me to do MRI of cervical spine which will do later this month. Everything is so confused.

 

[Nikki J]

I would ask my doctor to explain the discrepancy. We have seen cases where it was as simple as the word no ( as in there were no fibrillations or whatever) being omitted by error. No one here can tell you but your doctor can. Even if you really had fibs and fascics as I said without other findings it isn’t an als emg. You can also ask if you had umn signs on exam.

 

[Monkeymind]

Hi there.

I ask my neurologist about MND and he said that for now I don’t have signs for that. Tomorrow I will do MRI on neck, so kind of worried about it but expecting and answer after. If there is no MND I expect myelopathy or radiculopathy or herniated disks probably. Will share the resullts.

 

[Monkeymind]

Hi there!

MRI is done. There is herniated c5-6 and c6-7 disks and some stenosis in front likvor space. I already ask if that could be the reason for bilateral hand weakness, no answer for now. Do not know to what doctor to visit now? Any suggestions neurologist, orthopedist or neurosurgeon.

 

[rmt]

I would think that whoever ordered the MRI would be the person to talk to about what the next treatment or testing steps should be.

 

[Monkeymind]

Quick update.

I went to neurosurgeon to check my cervical spine MRI and said it’s normal despite the fact the radiologist in the hospital said there are c5,c6-c6,c7 stenosis and protrusion, just to mention I have positive bilateral Hoffman (I guess is because of that c5;c6…. ) .The doc send me to MRI of brain because of hypperreflexia and brisk tendon reflex, he was suprised that Babinski reflex is missing. I explained him that I am with anxiety and panic attacks from my childhood when was 15 , now I am 32 and they are the reason but he said no,no,no, it’s in the brain.
Anyway MRI of brain is clean. I am guessing that this confirm that there is no UMN damage / pathology/ problem, am I right? The neurosurgeon said if MRI of brain is clean he will send to other doc to perform genetic test, but didn’t tell what exactly ( and I didn’t ask because probably is better not to know for now) I can only assume is ALS, not sure.
I paid for my MRis ( was unpatient to wait approval from healltcare) but the neurosurgeon send request to national healthcare, so now I got a free mri and think to check my thoracic part of spine. LMN are located there right, in thoracic spine?
Despite the good results of both MRI‘s I don’t fell calm, because they do not exclude ALS or MND.

Wishing you blessed holidays.