New member, similar symptoms

[SClayton]

I'm 63. I've had left leg issues for a while, 8-10 years, worsening limp, unable to lift my leg, drop foot, stumbling gait, and nighttime cramps.

In Dec 2012 I was diagnosed with Cryptogenic Organizing Pneumonia (COP). I tell everyone that Cryptogenic is Latin for "we don't know what you got". Anyway, that adversely affected my lung function - O2 saturation. Treatment for COP was heavy steroids - prednisone - over 11 months My leg & hand cramps got worse on steroids but the cramps pre-date the COP. Steroids suck.

I wonder if anyone on the forum has had COP/BOOP in concert with an NMD, or am I just special.

I've had tingling, weakness, and stiffness in my left hand and an odd left shoulder -- it feels like someone is pushing down on it -- for a while as well. After a couple MRIs, I had c4-5, 5-6 discectomy & fusion in March 2016. Going into it, I hoped it would help my leg. Not much improvement with my hand & shoulder, they're different but still screwy. My leg is worse. I'm walking with a cane and climbing stairs is very difficult.

I was referred to a neuro and am scheduled for an EMG in a couple weeks. Based on symptoms, age and slow onset, I suggested PLS to the neuro. She nodded and said a PLS diagnosis would take a while, but that's what occurred to her as well.

 

[Atsugi]

Hi, SClayton. Welcome. Thanks for including really good details.

I'm not an expert on PLS, but I know it is very similar to ALS. In fact, ALS strikes the Upper Motor Neurons (in the brain) and the Lower Motor Neurons (in the brain stem), WHEREAS PLS destroys only the UMN.

About your leg. If ALS or PLS began its work way back years ago, you would be really badly disabled or dead by now. So I don't think ALS or PLS has anything to do with your leg. Sounds like a localized nerve problem. Could be a nerve somewhere near your hips, backbone, or neck.

The breathing problems--same thing. If ALS/PLS had struck you in 2012, the odds are that it would have spread its destruction throughout your body by now--you'd be in a wheelchair at least.

Sounds like they found the problem for your left hand and shoulder. Also, ALS doesn't cause tingling. You see, MND is not a muscle disease, it's a disease in the brain (UMN) or brain stem (LMN) or both, that destroys the nerves up there that send signals down to the muscle. Since those nerves in the the B and BS are shot, they can't send the "go" signal to the muscles that would cause the muscle to contract. So the muscle gets weak and rather quickly useless, limp, paralyzed. In the brain, the disease moves from one nerve to the next in serial fashion, so there is progression to adjacent areas. First a foot, then a leg, and upward, for instance.

So I see no reason to suspect either ALS or PLS. The EMG is useful for other things, so perhaps your doctor is looking for something else.

An expert on PLS will come along shortly, I'm sure. Hope this helps a little.

 

[SClayton]

Thank you, I'm looking forward to other folk's comments.

cheers

 

[ShiftKicker]

Mike, I don't think there's an expert on PLS here- There are so many different experiences with those who're on the diagnostic train to a PLS diagnosis- some of them taking a decade or more to get an answer that fits. However, Mike is right in that it usually takes less than 10 years to be handicapped in some serious way.

Clayton, Mike is right about the tingling, etc. Sensory stuff is generally a sign of other issues. An emg rules out many many things, not least Motor Neuron Disease.

PLS is a diagnosis of exclusion- meaning they have to explore and rule out many other things that can cause spasticity and Upper Motor control issues. With your past lung issues, there is a question (unless it's already been ruled out) of autoimmune or inflammatory causes to your limb issues. I would speak to your doctor about what things they've already ruled out (lupus, leukodystrophy, cerebellar ataxia, paraneoplastic syndrome, mitochondrial/metabolic, MS, medication caused, viral issues, etc) with imaging and blood tests. If your neuro is a general one, make sure you get a referral to a neuromuscular specialist who has the experience to assess those odd little symptoms that others may miss as a way to rule out many different causes for movement disorders.

Best of luck with your emg-

Fiona

 

[SClayton]

Thanks. I have confidence with my neuros - Univ of Utah Hospitals, Neurosciences Center.
I was in the hospital for 10 days with COP pneumonia. They did lots of tests - including a lung biopsy. To an extent, COP is also an exclusion diagnosis. I've been ascribing limb weakness to low oxygen saturation, but it kept getting worse while the O2 got somewhat better.

Thanks for the good wishes.

Scott