Back to stay

[jennibf]

Almost one year to the day from when the symptoms first began:

For all you who remember me:

Good news: not MS or MSA....

Bad news: PLS

I'm here to stay, not sure how much I'll actually be here because I don't feel so great. My heart stuff is back, too, as I shared I think in another post but today I was told that my neurologists have conferred, and after all of the testing they have decided I have PLS.

It is now affecting my mouth. I still have tons of fasciculations and now I have almost constant salivation issues..sometimes speech issues (when I'm stressed and really tired).

Colors are still more vivid. Life is beautiful.

Jennifer

 

[t34gib]

Jennifer, Welcome. You are right , Colors are still more vivid and life is beautiful. And, the sun still shines and the sunsets are breathtaking.
NancyS

 

[Zaphoon]

Jennifer,

I'm sorry to hear you've been given the PLS diagnosed but I know you are relieved to at least have an answer. I'm also glad because now I know there is someone else out there being told they have PLS and fasciculate like the devil. I am now in very good company!


Here's hoping some good rest will bring you some respite.

Zaphoon

 

[Al]

I remember you Jennifer. The diagnosed stinks but hope we can help each other along the way. Hope you are a slow mover.

AL.

 

[jennibf]

Thanks to you all. Yes, Kim, I have those crazy fasics, still. And, Al, thank you! I really hope I am a slow mover also ...hope and pray, hope and pray...

Hoping and Praying,

J

 

[olly]

hi jenni.
sorry to hear you have now got a pls diagnosed,yes it stinks but you could have had a lot worse.
we are all here to help and support you whenever you need it.

we all go through bad periods from time to time when we feel things are getting worse.
its easy to say but during bad times you need to stay positive.

i too have fassics,started with them about 8mths after the first symptoms.
that will be about 9yrs so they can't be too ominous.

thankyou for your pm. in response to your question there is no connection as such to the hypotention and pls.
after ms i was evaluated for msa but again mri was normal,they thought maybe it was the meds.
i cut down on baclofen and stopped the amitryptoline,that helped for a short while but is obviously not the cause.

in any neurological condition other cns areas can be effected or develop seperate conditions,this is probably the case with us.
there is complicated hsp which effects other areas,so we may have complicated pls lol.

i hope you start to feel a bit better soon,and dont be going anywhere:-D

 

[Wynn]

Jennifer, Zaphoon, and Olly,
I'm in good company with the three of you. My bulbar onset started in the Fall of '06. I was diagnosed with PLS in Fall of '08. I can't speak intelligibly any more--it seems like there is a disconnect between my thoughts and my talking--my thinking about what I want say is clear, but I can't say it. I'm beginning to have swallowing problems. I have slight fascics in all parts of my body, now. My coordination is slightly compromized. I also have an advanced case of essential tremor.
Wynn

 

[Zaphoon]

Wynn,

Welcome to the company of we PLSers! I'm sorry you have such bulbar issues. I have on again - off again issues with my voice getting gravelly and am thankful it hasn't happened in a while. My balance is good and for now, I am walking unassisted. Last year I sported a cane for a while.

Here's hoping you will continue to enjoy our company! PLSers are a rare breed!

Zaphoon

 

[hopingforcure]

You know I really think Fasics can and do go along witht PLS even though most professionals say it does not. MY theory is that fasics can be from irritated nerves, I have mostly UMN problems, and have always have fasics. I think there really all kind of forums of this thing, more than most docs ever know. We gotta keep on keepin on...