Old 12-01-2017, 02:47 PM #1 (permalink)
lilnicky's Avatar
New Member (Say Hi)
 
Join Date: 2017
City: Dublin
State: Co. Dublin
Country: Ire
Diagnosed: 11/2017
Interest: I have been diagnosed with UMND/PLS.
Posts: 1
lilnicky is on a distinguished road
lilnicky lilnicky is offline
New Member (Say Hi)
lilnicky's Avatar
Join Date: 2017
City: Dublin
State: Co. Dublin
Country: Ire
Diagnosed: 11/2017
Interest: I have been diagnosed with UMND/PLS.
Posts: 1
lilnicky is on a distinguished road
Talking Confused

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
lilnicky is offline   Reply With QuoteReply With Quote
Old 12-01-2017, 05:58 PM #2 (permalink)
Atsugi's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 4,683
Atsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant future
♥ Atsugi Atsugi is online now
Extremely Helpful Member
Forum Moderator

Atsugi's Avatar
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 4,683
Atsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant futureAtsugi has a brilliant future
Default Re: Confused

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.
Atsugi is online now   Reply With QuoteReply With Quote
Old 12-01-2017, 06:44 PM #3 (permalink)
ShiftKicker's Avatar
Moderator
Forum Moderator
 
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,137
ShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud of
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator

ShiftKicker's Avatar
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,137
ShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud of
Default Re: Confused

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.
ShiftKicker is offline   Reply With QuoteReply With Quote
Old 12-01-2017, 07:59 PM #4 (permalink)
Vincent's Avatar
Senior Member
 
Join Date: 2013
City: Barrie
State: ON
Country: CA
Diagnosed: 08/2014
Interest: I have been diagnosed with ALS.
Posts: 608
Vincent is just really niceVincent is just really niceVincent is just really niceVincent is just really nice
Vincent Vincent is offline
Senior Member
Vincent's Avatar
Join Date: 2013
City: Barrie
State: ON
Country: CA
Diagnosed: 08/2014
Interest: I have been diagnosed with ALS.
Posts: 608
Vincent is just really niceVincent is just really niceVincent is just really niceVincent is just really nice
Default Re: Confused

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
Vincent is offline   Reply With QuoteReply With Quote
Reply

Tags
back, brain, cold, confused, diagnosed, diagnosis, fell, helpful, mnd, pls, pls diagnosis, reading, story, symptoms, test, wrong

« Genetic Testing | - »

Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Really confused fishndad1950 Do I Have ALS? Is This ALS? 5 01-31-2015 12:18 AM
Still Confused? CCINJERSEY General Discussion About PLS 9 10-03-2012 04:07 PM
New and confused Vonzuber Do I Have ALS? Is This ALS? 19 07-15-2011 02:51 PM
Confused about FVC! stephie Current Caregivers (CALS) 7 10-13-2010 07:18 PM
Confused! hunpy66 General Discussion About ALS/MND 3 08-22-2009 09:10 PM


All times are GMT -5. The time now is 05:37 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016