In waiting PLS for now

[Mfb541]

So it started in April 2020 as slow speech and a little muscle weakness. Neurologist sent for bloodwork mri and emg in Dec all came back clean. Sent to other specialist in Lebanon and Boston dna test some abnormalities. Both kinda ruled out ALS but agreed some neuromuscular disorder.
Since speech has declined tremors have started and increased muscle stiffness is daily.Physical,speech and occupational therapy has helped but symptoms are slowly declining. I have since retired from my construction job, applied and have been granted ss disability.
For past 5 months I have been exercising regularly just to maintain strength and that all it’s maintaining. Balance is poor eyes get so heavy mid evening. So grateful financially ok it’s this waiting that’s been driving me mentally insane. What going to give out next. Sorry for rambling, thanks for reading

 

[ShiftKicker]

Hello and sorry to welcome you here. I have moved your post to the "Newly Diagnosed" section.

Are you attending a particular ALS/MND clinic?

Here are some helpful links:

Second opinion/clinic visits

Resources

Once again, welcome.

 

[Mfb541]

Hello thanks for reaching out to me that was kind of you. I read through most of the links you provided. At this point I’m just seeing my local neurologist no als clinics. Second and third opinion were both leaning towards PLS. One of the doctors was a very distinguished and considered a leading professional in the ALS diagnosis thought that 2+ years of symptoms was not enough time to completely rule it out. So with the slow progression of my disease I sit and wait in a sense. I continue to stay active and I feel that in time a full diagnosis will come good or bad. I really wanted to reach out and maybe develop a support staff just in case. What my body is dealing with even now is scary. Thanks again

 

[KimT]

Hi and welcome.

I think Mayo waits 3-4 years before they make a ruling on PLS vs. upper motor neuron dominant ALS. Great that your EMG was normal. Hoping it stays that way.

Are you taking any meds like Baclofen?

I think it's great you are exercising. Just be careful not to fall. If you have access to a heated pool (local YMCA, etc) that seems to help people with PLS. I have ALS and the pool is the only way I can exercise, aside from upper body work and stretching.

I have a 46 year old friend with PLS. She had a baclofen pump so the med goes directly into her spinal cord. Supposedly there are fewer side effects.

Yep, it's all scary but you aren't alone.