Going through diagnosis... I need people to talk to...

[KimT]

My twitches didn't stop no matter what. I tried everything just because they were annoying.

 

[KimT]

Stuart, I'm sending you a private message on the UK forum.

 

[StuartEE]

I went for my MRI result today. The Neurologist said there is nothing wrong on my scan.

No evidence of spinal chord damage or signs of MS.

I'm getting very worried now.

 

[lgelb]

Again, just because your MRI is clean doesn't mean that you have ALS. Millions have a clean MRI and very few have ALS. You have presented no reason to worry about it, so stop worrying and keep living. See a counselor if you can't let go of your anxiety.

 

[StuartEE]

Again, just because your MRI is clean doesn't mean that you have ALS. Millions have a clean MRI and very few have ALS. You have presented no reason to worry about it, so stop worrying and keep living. See a counselor if you can't let go of your anxiety.

A clear MRI, muscle atrophy on my left leg and arm, weak voice, swallowing issues and muscle twitching; what else it could be is dwindling.

My neurologist said the most probable cause is a form of MND.

Muscle conduction test today.

 

[Bestfriends14]

The onset of ALS doesn't present all over as you are describing, so all signs point away from ALS. As Laurie says, go live your life. My husband just passed away from this wretched disease; he would have given anything to have your issues.

 

[rmt]

Your neurologist found no weakness and you can walk 12 miles a day. Only you think your speech is changed. That doesn't sound like ALS to me.

Also, when did your neurologist say the most probably cause is MND? You mentioned your visit to him in your first post but it sounded like he didn't think it was MND. Did you see a second neurologist?

 

[StuartEE]

Your neurologist found no weakness and you can walk 12 miles a day. Only you think your speech is changed. That doesn't sound like ALS to me.

Also, when did your neurologist say the most probably cause is MND? You mentioned your visit to him in your first post but it sounded like he didn't think it was MND. Did you see a second neurologist?

On my first visit, my neurologist said we can't rule out MND but we will do an MRI and a blood test to see if there's any spinal or neck damage. Which there wasn't.

I had my muscle test yesterday. He gave no hints. He said he needs to analyse the data and it will be passed to my neurologist.

I presume the test with the needle is listening out for pops of sound. It was mostly silent besides a background hum. At one point there was a loud pop and the doctor quickly looked startled. I said I think that was causes by me moving my foot. We sat there for another min and there was no other sounds.

My neurologist said he is going to refer me to a another neurologist who specialises in MND.

 

[StuartEE]

People who have had an EMG before.
How are you feeling the day after?

I'm a little sore where the needles went in but my right index finger is really twitching which it never did before.

 

[Nikki J]

As someone who has had many emgs ( for resarch) both before and after onset both those things are normal. Your muscles are irritated by needles

also a quiet emg when your muscles are at rest would not indicate an abnormality. the spontaneous activity on emg that is part of what makes up an ALS emg is noisy

please only post again when you have results to share

 

[StuartEE]

I just got back from my neurologist.

The electric shock part of the emg was fine. The needle part was detected the twitches. He also said that when nerves die you can also detect other nerves repairing themselves.

Unfortunately that was absent.

I'm being booked for a spinal tap to cover all bases but it is almost certainly MND.

I'm being referred to the regional MND clinic.

 

[lgelb]

What you mean about the EMG results is not clear to me. Can you upload the de-identified report?

 

[KimT]

I think he's talking about reinnervation.

 

[StuartEE]

What you mean about the EMG results is not clear to me. Can you upload the de-identified report?

i can probably contact someone to get a copy if that.

My neurologist said that when using your muscle your nerves can to repair or bridge broken nerves. I'm pretty sure he said that is not happening, because I remember thinking that must be worse.

So the nerves are dying and not attempting to repair.

I'll contact my neurologists secretary tomorrow and ask to clarify that.

I'll email the secretary of the person who did the EMG and ask if I can be sent the de-identified report.

What is the de-identified report?

 

[ShiftKicker]

De-identified means all information that can be used to identify you needs to be obscured in some way.