Could you experienced people please answer this question

[Jack_104]

I had a diagnosis of ALS 5 months ago.
Symptoms;
Fast Reflexes
Fasciculations: Arms, Chest & Legs
Muscle wasting and loss of some functions of Hand.

Note: I think that the diagnosis was way too quick.

After the diagnosis I had an EMG which showed normal nerve conduction ( except denervation of the arm I think ?)
An MRI of the spine showed a herniated cervical disc C6/C7 with Osteophyte formation, though not causing an obvious radiculopathy.

I started to develop sensory symptoms: Intermittent Pins & Needles in Hands and Feet and electric shocks & "sharp pins" into feet and rest of the body, especially when moving head & neck.
Note: I had a painful stiff neck.

I went onto Non Steroidal Inflammatories 2 months ago and have had a definite improvement (small)in my hand and the pain in the neck has gone.

What I think could be happening is that the area around C6/C7 is swollen affecting the nerve(s) to my hand & arm and also pressing on my nerve roots & spinal cord to cause the fasciculations below the level of my arms.

Is this possible ?

All my symptoms ( Hand and fasciculations) seem to vary with my neck position ( worse with head forward).
Note: The MRI was done with my head back, could it show something different with my head forward ? e.g Osteophyte protruding into spinal cord etc ?

I have been told by the Neurologist that I would have to be compressing quite a few of the nerve roots in my spine to get fasciculations in arms and legs.

Is this true ?

I believe that with ALS, fasciculations happen when control of the muscle is lost and therefore it would become apparent quite quickly...i.e weakness would be noticed ?

How long does it take for weakness to become apparent after fasciculations have started ?

After 5 months I seem perfectly normal in the rest of my body (except for the fasciculations which can be quite intense) and I have had a small definite improvement in my hand.
I haven't lost weight and do not get tired.

What do you think ?

 

[Clbrink]

I think you should get a second opinion from another Neurologist that specializes in ALS. Then hopefully you will have no doubts, I really hope this is a wrong diagnosis! Good luck!

I do believe that PALS Do not "get better" They do progress at different rates though.


Tina

 

[mamaoftwo]

Did they consider MMN as an alternative? I dont understand why you got the diagnosis BEFORE the EMG was performed. Seems odd!

 

[CindyM]

Hi Jack and welcome to the forum. It seems we have something in common! My local docs-3 of them- suspected ALS. One neuro even said, "I am not picking up anything on the EMG yet so we may have to repeat it at some later point before it will show anything."

So I asked for a referral to the ALS clinic and that was over a year ago. At that time, technically I did not have ALS, just "something neuromuscular." And here it is a year later and I am still the same. Maybe you can join my happy little group! Definatlely get a second and even third opinion and let us know how it goes! Cindy

PS. Now the locals are saying "I wonder if anything will show up yet if we repeat those EMG's?" I handle this the way I handle the GP's reguest to go on statins. I just give them the "look" and everybody backs off. I am starting to be a fan of that look. I should try it the next time a salesperson won't wait on me. :-D

 

[AHands]

I had a diagnosis of ALS 5 months ago.
All my symptoms ( Hand and fasciculations) seem to vary with my neck position ( worse with head forward).
Note: The MRI was done with my head back, could it show something different with my head forward ? e.g Osteophyte protruding into spinal cord etc ?

That's intersting. My MRI shows displaced C6 C7 disks and they grey sheath around the (white) spinal chord is missing at that spot. One of the neurologists sent me for a second MRI to see if things move with my head in different positions (I bicycle a lot, so my head is often back for hours at a time). He said the MRI folks hate doing these images with the head in different positions, because the machine is designed to take pictures only with your head flat against the table.

So you may need to push to get this done.

Also, make sure they give you a copy of the CD-ROM with the pictures. The CD includes the software for viewing the images. Its very helpful to have a copy.

I suppose you know that ALS doesn't affect sensory nerves and doesn't cause pain. In my case, they say its not the displaced disk thats causing the problem, because I'm not in (much) pain. If it was the disk, thered be a lot of pain.

 

[crystalkk]

Jack,

Simple Xrays flexing the neck forward and backwards can show if there is Osteophytes protruding into spinal cord. I am not diagnosed, but in the beginning they thought it was my neck. When i went to the surgeon
they did xrays of my neck in different positions to look for Osteophytes compressing on the cord.

 

[laurel]

Reply to Jack

Hi Jack,
It sounds like you could use a second opinion for sure. My husband had many of your symptoms and after several months of investigation he has been diagnosed with CIDP--MADSAM Lewis Sumner variant. His primary symptom was atrophy of the rt. hand and then foot drop. He did have some tingling sensations and had fasciculations in his right arm. He has had some good response to IVIG and he was recently put on Imuran as well. He began seeking answers about 3 years ago after a failed Carpal Tunnel surgery. He only got answers after being referred to a neuromuscular disease clinic. The first neurologist insisted that he had Carpal Tunnel Syndrome. Initially at the neuromuscular disease clinic they did query ALS, but thankfully the neurologist is pretty sure it is CIDP.
Good luck.
Laurel

 

[Jack_104]

Thanks for your responses.

I feel sure that it is actually my neck, but the stakes are so high.

Jack

 

[crystalkk]

Jack,

Were you diagnosed by als specialist? Did you get an opinion from a nuero surgeon about your neck?

 

[ohioprof]

Hey Jack

I'm new to this forum but have been following it for some time. The advice on here seems to be pretty darn good. I also have done a lot of research prior to joining and I teach physiology to medical and nursing students, so I had a bit of knowledge about ALS (although I'm far from an expert and it appears as though I'm a novice compared to many on here) and I also have knowledge about the body in general. Given your cervical herniation and your symptoms, it is my opinion that you don't have ALS. Compression of the spinal cord itself at the cervical region can cause the symptoms you're seeing in your lower extremities. I also have found from other material (and in my opinion also), fasciculations can be produced by cervical disk herniations if they are compressing the spinal cord.
As the advice has already been given to you: seek another opinion. I would remain hopeful if I were you. Take care.
Nick