Hi, new member Debbie

[dkcarl62]

My University of Michigan neurologist is hesitant to come out an diagnose me with PLS. She says her "best guess" is that I have PLS, and "Unfortunately, it may take several years of observation to be sure of final outcome". In the mean time, I continue to decline. I dont care so much anymore about a diagnosis, because it won't make any difference in my treatment. I am just looking for support and guidance and tapping upon a knowledge base to deal with the disability for now, and what I may have to plan for in the future.

 

[JimInVA]

Greetings, Debbie!

I am sorry that you have to find yourself, here... but welcome nonetheless. There is an absolutely amazing group of real, caring people within the boundaries that define these ALS Forums. There is a familiarity with all stages of this disease's progression. But our combined greatest strength and value is our ability to help each other tackle whatever each new day brings our way. I look forward to getting to know you...

Jim

 

[cheerleader]

Welcome to another Michigander! Sorry you are here, but you will find lots of support and understanding! Donna

 

[MaxEidswick]

.>My University of Michigan neurologist i

hoppefully better than hoke ;

 

[Nikki J]

Hi and welcome.
Hoping that whatever you have it progresses slowly! You are right as long as you get support and treatment labels don't matter. ( unless you are a vet? Then a label could get you benefits)
The PLS people here are a great bunch and will give you lots of support

 

[dkcarl62]

Hi all, thanks for your greetings. I am sorry we are all here, but its great to have someplace to turn for help, understanding and support.

 

[IhavePLS]

So very sorry that you had to join, but welcome to the forum. You'll find the folks here to be experienced (***) and wonderfully knowledgeable.

*** "Experienced" strikes me an awkward choice of words -- having "experience" with MND is not a preferred state (although our tenure does help others who are new here). Let's just say that most here are "wise" (I am excluding myself, because I'm still learning)...

 

[LoveMyKids]

Hey,
Welcome. Know you will always find help and encouragement here.

 

[Cammarak]

Hey, Debbie! This is a really great site with many knowledgeable people who can help you out with good advice and even treatments that your docs may not have mentioned. I hope you have a very slow progression and you have a lot of good years ahead of you!

 

[Trippy]

Hi Debbie,

Welcome. There's lots of information on this forum if you search through past threads. I am in a similar boat as you with the tentative PLS diagnosis from J. hopkins. I think lots of us have to go down the road a bit before we know. You didnt mention your current symptoms or progression history but I'm curious if you care to share.

Take care, Kathy

 

[Clearwater AL]

Hi Debbie,

It's kinda awkward to say "Welcome" but...

As you may know or have read here... you will need patience traveling the "PLS Road" to a confirmed diagnosis of PLS. I went 5 years ago from walking with a limp to an Ortho to an Ortho Specialist to an initial diagnosis of Chiari Malformation Syndrome to a Brain and Spine Specialist to a Neurologist 3.5 years ago to a written diagnosis a year ago. MRIs, EMGs, NCSs, Blood Tests, Babinski Test, Hoffman Test, endless dog tricks ( blow out your cheeks, smile, squeeze my fingers, hold up your arms, drag your right heel up your left leg, now the other, walk on your heels. walk on the balls of your feet, tap your thumb and index finger as fast as you can, touch my finger then touch your nose as fast as you can, walk down the hall, come back...)

I was always waiting for, "lay down, roll over, up, sit, shake... good boy!" Hell, I wanted a treat after each. But, we don't do much of that last few visits... some I just can't do anymore.

So, the key word is... patience. In the end, the day after you get a diagnosis... you have a diagnosis. Nothing has changed.

Again, "Welcome"... I'd rather say, "Too bad you're here."

 

[dkcarl62]

Hi Kathy,

My first symptom in fall of 2012, was that my leg would stiffen up under stress. My bigger problem at the time was back pain from a slipped vertebra and spinal stenosis. I had a lumbar fusion and laminectomy in dec of 2012. I spend 10 days after that surgery in a rehab facility unable to walk and in extreme pain. I have never fully recovered but because of involvement now in my hands, spinal damage from the surgery is no longer being considered.

Hi Al,

I've only been doing "tricks" for about 18 months, but it's already old. And you're right. With or without a diagnosis, I'm still dealing with the same set of challenges, fears, changes, and grief as before.

Debbie

 

[Janie H]

welcome Debbie, this is a great place for advice.

Janie

 

[MaxEidswick]

>I was always waiting for, "lay down, roll over, up, sit, shake... good boy!" Hell, I wanted a treat after each.

lol!

 

[Clearwater AL]

Hey Max, I know it's to measure progression but it does get a little old. Anyway, we don't do much of that anymore...