New here with some UMN disease, possibly PLS?

[olly]

Hi mike.
Firstly ,for about 7yrs before diagnosis I was 99.99%sure it was ms because I had 4 episodes 6months apart of bedridden fatigue during the first 2yrs.....after each episode of fatigue my symptoms excelerated.
Since then I don't get fatigue that bad anymore...just your minor everyday type.
I do find that I follow a 12-24 month pattern of stability/plateau in progression then I get a severe spurt for several months.
Daily or weekly good/bad days depends on many things....stress,general health ect ect.
But as you put it I do know that I do have a plateau/progression thing going on like in ms.
Ms effects white and grey matter were as pls effects just grey matter.......theres bound to be some similarities.
However just as in other illnesses we can progress differently to each other.
Does that answer your questions?

 

[IhavePLS]

Hi Caroline, yes - thank you!

I appreciate the distinction made above (i.e., MS = white + grey matter; PLS = grey matter only), as this makes very clear the similarities (yet, the differences).

My own experience has been much like that which you describe above...it's somewhat as if there are little cycles that occur with the bigger cycles (that is, smaller cycles seem to occur within much longer timeframes of progression/plateau).

Thanks again - very much!

Mike

 

[wendya432]

Is that why you can see MS on an MRI but you can't see PLS? The white/grey matter thing.

 

[olly]

Yes wendy,a normal mri can only detect white matter changes..........theres is a mri spectroscopy that can be used on grey matter but its not used for diagnosis as changes may not be picked up till later in the course of desease.
So as yet until they can create a stronger mri to detect early grey matter changes its diagnosed by clinical exam....or autopsy.

 

[johnnyliverpool1]

am gonna wait till my autopsy..i will be pleased to tell all interested what it was...johnny

 

[R9L13026]

I'll be interested in reading that post from the other side.

 

[Bad Balance]

It sounds like you should print your post and make an appointment at the nearest ALS clinic. Why obsess over self diagnosis.?

 

[johnnyliverpool1]

looking forward to sending heavenly post....or maybe not, its a bit cold six feet under....johnny

 

[R9L13026]

Cremation I don't like the cold.

 

[Barbie]

one of the things that I have noticed about my husband is that he also has plateaus and periods of decline as well. He was diagnosed with ALS, but I believe that he is UMN dominant. He will appear fairly stable for 3-6 months, then have a period of decline for 3-6 months, and so on. Most Pals just go down, but not him. his decline "angle" is not as sharp as time has passed also, I don't know if that is because he has less to lose... This has been going on since the beginning--

I don't really hear about it in ALS so I was just wondering.

 

[olly]

I think again it needs to be said,there are variations in progression.
This can be seen in most diseases..........ms and other neurological diseases plus things like cancer ect.

In pls it is usually a slow progression but rarely you can get someone who loose all function within a few years.
In als you can get someone who declines rapidly and die within 6months or some can live 10+years.

Whatever disease it is what it is ,theres no point in comparing yourself to others and wondering why your different........its just how are bodies are made up and how it deals with said illness.

I think of myself as very very fortunate with my progression so don't like to complain.

Barbie,your husband being umn dominant would certainly account for his slow progression and maybe even the "cycles" he gets (pls cycles not bikes)LOL