Slow or fast progression

[Sammy88]

Thanks Nikki J, Hope you are well 😀.

My ALS journey has definitely been strange. After the professor saying nothing is left on the table except MND, im having a brain scan and another emg the following week. Seems back to front . I have no other conditions/ diseases. Maybe they are just ticking boxes.

 

[Buglaw]

I had an MRI done after being diagnosed. There is some research being done on MRI imaging and detecting UMN degeneration. So, it could be that.

 

[affected]

You have the right to ask why tests are being done.
Then you can decide if you are up to it or not. If it is not going to impact your diagnosis, you may decide not to.
If it is part of research you may want to take part.
But you have the right to know why and who benefits from it.

 

[MupstateNY]

I'm weird. I find the percussive loud sounds of an MRI relaxing.

I remember attending a master class in music school, where a student played Bartok. The teacher, originally from Hungary, said that he was working on Bartok when in Hungary and heard the cook banging pots and pans in the kitchen. He said that listening to the cook's noise helped him finally truly understand Bartok. He realized the similarity between the piece he was working on and the sounds coming from the kitchen.

 

[Sammy88]

MupstateNY, I would say that's weird cos I absolutely hate mri scans.

Returned for the 2nd time for the trial , went through another 4 hours of testing and passed, but right at the end got told my place on the trial had already been filled so no more places left.

Unbelievable that's 2 wasted journeys that takes 2 hours each way due to the city traffic.

My bad luck keeps happening.

 

[Nikki J]

Sammy very sorry to hear that. How very frustrating!

 

[MupstateNY]

Bummer, as we say in the States! How do you say that in UK English?

Silver lining, maybe? No MRI!

 

[Sammy88]

MupstateNY, we say Gutted in the east end of London .

I still had my mri scan tho I never received the results.

 

[MupstateNY]

Gosh. There should be both imaging and a radiology report. Both should be sent to the neurologist to review. The patient usually gets only the report. You might have to go through some hoops to get the records sent to you and the neuro. Do you guys have a patient portal with the NHS?

 

[Sammy88]

Yes we have patients portal with the nhs, but some GP surgeries don't do it or refusing. My GP surgery is shocking. To be honest the NHS in London is shocking bad.

Is the USA system any better ? It seems better to me .

 

[MupstateNY]

It varies! If you look at some of my content, you'll find plenty of complaints.

I shopped around for a primary. I got a good one on my third try. Can you try switching offices? For me, a functioning portal is key. I hate getting an ear worm from an annoying, repetitive muzak loop.