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Hey Mike (and Debbie), I agree. As I previously posted, (" 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 (also to a Pulmonologist who wrote my breathing difficulties are neuromuscular related) 3.5 years ago to a written diagnosis a year ago. It's a long road and Debbie's Neuro making a suggested call of PLS is somewhat of an early call. Patience.
 
Thanks to all for your response. It is SO helpful to be able to connect with folks walking down the same road. I bet we all wish that symptoms were more predictable for us, and we all pray that symptoms develop slowly. My kids don't know what my probable diagnosis is and only a very few friends know the seriousness of my illness. Because I've never recovered fully from back surgery, most folks think I have spinal cord damage. I don't know what to say to people. Have you found, that in addition of losing so much physical functioning, that you've also lost friends too? We just can't keep up socially and were losing touch with many friends.
 
Debbie, as you wrote, (" Because I've never recovered fully from back surgery, most folks think I have spinal cord damage. I don't know what to say to people. Have you found, that in addition of losing so much physical functioning, that you've also lost friends too? We just can't keep up socially and were losing touch with many friends.")

First, I have read all of your posts. I think, my opinion, you are getting way ahead of yourself concerning PLS. As your Neuro told you... it may take years to get a diagnosis. Don't convince yourself you have PLS... yet.

Being you - yourself said you have never fully recovered from back surgery there are so many other possibilities. Along my 5 year journey to diagnosis, MND wasn't really brought into the picture until 8 or 9 months before my diagnosis.

You have written about having a personal trainer and doing leg presses then thinking you need a power scooter just to get around. I think, my opinion, you need to give the internet and maybe this Forum a break until you have been seen by your Neurologist several more times. As you wrote, she (your Neuro), at this time, doesn't think any further testing needs to be done. She's an expert... the Internet is not. If you doubt her... get a second opinion.

As far as friends... it separates true friends from good time friends.

Again, don 't convince yourself you have PLS... yet.
 
Al,

I don't think I mentioned that the prescription for the power scooter from the neuro gave a diagnosis of PLS. While I've never fully recovered from my back surgery, the effects of spinal cord injury stays relatively stable, according to the doc, and doesn't affect the hands, and my hands are affected now. I might be able to do some leg presses on a good day, but my husband has to help me get out of the recliner and on a bad day, I can't get into bed on my own because my legs are too stiff to bend at the knee.

I appreciate the help and support I've gotten on this forum. I have learned that there are a lot of other people who been down the same path and I don't feel so alone now in my journey. I think I'd like to hang around, although I respect your opinion.

Debbie
 
From my perspective ( and I do not have PLS, but ALS so this is not my subforum though I can moderate it) you are very welcome. I think some of us were a little unclear as to where you might be in the diagnosis process. What I took from your posts is that you have confirmed UMN disease that is called PLS for now and the confirmation of that will be if you do not progress to ALS. Is that accurate? That the issue is PLS vs UMN dominant ALS and not PLS vs no MND at all?
You are welcome regardless as someone who has at the very least a strong presumption of MND
I pray that this is slowly progressing whatever the label
 
Debbie, of course you are welcome to stay being that you are seeing a Neurologist.

My thoughts came from the first sentence of your very first post,

("My University of Michigan neurologist is hesitant to come out and 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".)

My suggestion that you don't convince yourself you have PLS yet pretty much came from that.

I apologize if I offended you, or anyone else, making any suggestion seemingly incorrect.
 
ClearwaterAL, I agree with you there is no consistent study. PLS patients are usually expressed as a percentage of people diagnosed with ALS. The percentage varies from .8% to 2% in the studies I have seen with .8% coming from a recent one in 2009. About 3000 people get ALS in a year. So the range is around 24 to 60 people a year if you believe the studies. I still think the research is limited on PLS. PLS is hard to diagnose since symptom severity and progression vary so widely. I go to the MDA/ALS clinic in Dallas and I know they on have a handful of patients and that includes North Texas, parts of Oklahoma and Arkansas. I recently participated in a study on PLS and they had a hard time getting enough participants.
 
Hey BillBell52...

I've always felt I could corner "rare" when it comes to many things. :)

As I tried to relay to Debbie above, there are so many other possibilities, the diagnosis process can stumble on for years, some never do get a confirmed diagnosis because of it's rarity. I was just (apparently mistakenly) encouraging her not to convince herself she has PLS. Whatever.

I'm glad to read from your Bio PLS progression can be slow being that you were diagnosed 5/2005 That's nearly ten and a half years! I'd take that and more too! Hope you're doing as good as good can be for you. Golly, you're a senior - senior member. :)
 
PLS progression can be slow being that you were diagnosed 5/2005 That's nearly ten and a half years! I'd take that and more too! Hope you're doing as good as good can be for you. Golly, you're a senior - senior member.

I agree, 10 years sounds good, 20 sounds better!
 
Nikki, I think my diagnosis depends on what piece of paper I happen to be looking at. I have a very highly respected University of Michigan neuro of 30+ years who, in her wisdom and experience says her best guess for me is PLS. But I know she has to follow protocol and observe me for years before she can make that formal call. But as Al, in his wisdom said earlier in this post, "So, the key word is... patience. In the end, the day after you get a diagnosis... you have a diagnosis. Nothing has changed." He's right.
 
>University of Michigan neuro of 30+ years who

Amy? lucky!
 
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