Confused

[lilnicky]

Hiya guys,

New to this forum thought i would introduce myself. I have enjoyed reading all your helpful posts.

I was having a nosey round but couldnt find an answer to my query specifically so while saying hello i thought i would ask here.

So the very short version of a very long story.... i have been unwell for many years and have had one rubbish neuro after the other who either did nothing or said "you probably have MS" which isnt very helpful.

Anyway after my countless number serious fall down the stairs, a decent neuro and a ruiling out of MS... i was finally diagnosed with PLS.

They were able to diagnose it easily without a wait due to the length of time its been going on for.

Now the things im confused about. I never really thought it was MS because it obviously wasnt the progressive form as the brain lesions are not significant in number but it also cant be the replasing form as im progressively ill. With hindsight its obvious i have motor neurone. Anyway im going off track.

The main reason they thought MS is that i was diagnosed with optic neuritis.... even though i have never lost my sight which i thought was odd... my optic nerves just looks odd on inspection. I also had a nerve conduction test done on my ON and it was rubbish. Why do i have this? Can MND cause ON issues.... or is it possible the ON diagnosis wasnt quite right?

I also have 2 symptoms of MS that i cant seem to find as a symptom of MND. I am unable to regulate body temperature. Im always super hot or super cold. Also i feel my cognitive function has declined. Im not as sharp as i used to be. It has been suggestee that the hot/cold and cognitive function could be a result of literally ALWAYS being super exhausted and fatigued.

While it was a shock i do agree with the PLS diagnosis. I never considered MND but it is actually glaringly obvious now. I went to see that steven hawkins film a few years back and the part where he fell down the stairs made me flinch. I looked at my mate and said.... i know that feeling. Hindsight is a wonderful thing.

It is just those symptoms i cant explain. Is temp and cognitive function affected? Is my Optic Neuritis wrong or just a coincidence? Im so confused.

Sorry for the very long messege xxx

 

[Atsugi]

Hi lilnicky. I can't answer your questions but thought I would say hi anyway. Not a lot of PLS people here anymore. But there are a few, o they'll see your thread soon I'm sure.

 

[ShiftKicker]

Welcome!
As Mike says, the PLS side of things is not terribly active these days, but many do read the threads here.

I would say there can be a cognitive component to PLS. I have run into people in various groups who have reported issues. I have experienced a decline- particularly with regards to executive function/concentration. Irritability too. You're right about the fatigue being a possible culprit.

The peripheral/autonomic stuff is not a known PLS symptom, but, again, I've seen others report it. Particularly POTS (postural orthostatic tachycardia). Sensory stuff could be caused by spasticity pulling things out of whack and resulting in pinched sensory nerves.

Optic Neuritis on the other hand is not something I've heard. However, you could have the great misfortune of having comorbid conditions. Sadly, there's no law against having more than one health issue (though there should be!).

Are you still under the care of specialists? Are they still pursuing the reason for your ON? It might be of benefit to pursue the ON issue as seprate from your primary condition. Having PLS does not mean you can't have other health issues going on at the same time. Do you use BiPAP or CPAP? If not, it may help with fogginess and cognitive issues.

Anyhow, welcome to the group. It's an excellent resource for information and filled with great support.

 

[Vincent]

Hi back atcha. As the descendant of people who left during the famine, I have to ask; There's no alcohol involved is there? Teehee! On the serious side PLS being a pure upper motor neuron disease cognitive issues would be no surprise. The optic neuritis is a head scratcher though. The good news is that PLS has a much longer prognosis, though pain tends to be more of an issue. Welcome to the group no one should join. But if you have to be here. It's a good place to be.

Vincent Quinn