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wendya432

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Davison
Too bad, right? After all the testing and appointments and medical this and that. I just needed a break from thinking about "it" for a while. I tried my hardest to just ignore it and go on with my life. It is what it is, right? So far, still no diagnosis, just more wait and see. So what else can I do?

So, ignoring it isn't really that easy. I mean... how do you ignore when your body doesn't work right. But, I tried not to focus on it, gave up on the diagnosis hunt, haven't even been to the neuro in months.

We even got a puppy! 6 months old already when we got him. He's my walking buddy, and just general companion during the day. The kids are all in school and it's nice to have him around. He's 9 months now. I've been taking him for a walk every morning (ok, almost every morning!) since we got him. Hoping and praying that building up some endurance and muscle tone would help. Let me tell you, every day is just has hard as the first day. In fact there are days we skip the walk because my legs are too sore, or too weak. And I've actually noticed I'm progressing more and more. I'm sure it's good for me to use my legs while I can, but there has been no miraculous cure. (darn!)

So I gave in, and made another appointment with my neuro. Have to wait until february for his next available, but nothing is serious. I just know that I'm still progressing. Spasticity is at an all time high. Nothing is getting any better. And I can't just stick my head in the sand and try to pretend it's not there. Even my arms are getting worse, I can hardly pick up my laptop! Just don't have the grip strength anymore.

So I guess I need to find some happy medium... somewhere between focusing on being sick and ignoring it.

I also found something funny... While I was on my little trip to la la land, people assumed that I was feeling better because I wasn't talking about it. I just responded with a generic, no I"m still not well just not talking about it. Even my husband seemed to "forget" that I still have problems. I've had to remind him a few times when he would give me a hard time about taking a nap or not being able to do something (not in a bad way, just mostly in a joking manner) that things are still bad, in fact getting worse.

What a strange way to live with this damn slow disease...
 
Wendy, still hope the final diagnosis is something else that is curable. Know the wait is one of the hardest parts- but with kids and a puppy, sure your life has lots of moments of laughter and fun. Good luck! Donna
 
you have been around the site. there is some things you needed to take in on here. 1 is don't give up hope till the dr's knows. 2 max rules that he put up if you do have this.

i hope you don't have to be here. if you do you came to the right place. we all are in this together.
 
Hey Wendy! I know it gets discouraging when we feel like our loved ones don't "get it"! My kids ( and even my husband) are so used to mom being "strong like bull" that they don't take me seriously when I need help with something. Imagine everyone's surprise when I dropped the whole pot of gravy all over the open oven door because I tried to lift it up with my "weaker" arm! Brief grease fire and a lot of swearing later( I do apologize for that), everyone fell all over themselves offering help with everything else. For one day. But focus on all the things you can still do and revel in the abilities you have left. It can all go away quickly and you don't want regrets over being out of sorts with your loved ones instead of enjoying all of your time with them!
 
Wendy, as you have probably read... it takes 3 to 5 years for a diagnosis of PLS. Rarely is a diagnosis available in the third year. It's good that you can still go for walks. I'll pass onto you what a Neuro told me concerning PLS with a different end twist from others, "Use it, or lose it... sooner." If you not having any problems with Baclofen you're on the right med for PLS... for now. As I was traveling the road to a diagnosis I got to the point where I said, "What difference does it make? The Baclofen works and it's not ALS." Then it just became "Improvise, Adapt and Accept." One nice thing about my situation... everybody compliments me on how weight I've lost! I tell them, "Well, it's not a diet I'd recommend. And, by the way... I'm not on a diet." (235 down to 180.)

So, once again, Improvise, Adapt and Accept." And... "Hang in there..." :)
 
Should this be moved to "Do I have ALS?"
 
Hey Balance, I think in a previous Thread Wendy was told by her Neuro she did not have ALS but there was indication of UMN issues. There are a few others who post on this sub-Forum who have yet to be diagnosed but they were told they did not have ALS *but were told they may have UMN issues. Understand your point though.
 
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I don't understand you bad balance; nor you, Clearwater. Are you supposing that Wendy ( and others) are trying to convince themselves that they have this horrible burden? I've noticed the same reaction from you regarding my posts. I get the whole magical 3 years until diagnosis thing, but some of us have been at this in different ways and through various medical avenues for awhile. In addition to a neuro who is certain I have PLS, I've also been diagnosed in the past 2 decades with RA(although mioderate and with no connective tissue disease) and severe hashimoto's hypothyroidosis. I was briefly thought to have MS. And was misdiagnosed with ALS(although he meant MND, and I did not understand that at the time). People come here looking for like minded individuals who can offer support and a modicum of comfort perhaps, but your thinly veiled criticisms make me (at least ) want to slink away back to that lonely void where no one can even pretend to understand our struggle. I assure you I go in every two months for them to check off : yep. Still alive--must not be ALS. Let's stick with PLS. Once you've been diagnosed with an MND, you need a place to turn for answers and support. I think that's all most of us are looking for here.
 
Cammarak, don't get on me! Re-read my reply above. I supported Wendy. But... a diagnosis is a diagnosis. If you don't have one... you don't have PLS. Yet. So, don't hand me that "but your thinly veiled criticisms" bullshit. And the "Still alive--must not be ALS. Let's stick with PLS..." crap. It indicates that you don't know the difference between ALS and PLS. I will not apologize if you may have taken anything I have written wrong that may have offended you. That's your reflection. I have NEVER told you that you need to post in DIHALS Forum. But... I do understand your frustration. However, get over yourself and your sensitivity.

PS. I edited my reply to Bad Balance.
 
Hi everyone,

Allow me, please, to suggest:

1) Even the very best of neurologists are usually slow to diagnose PLS. It's not preferable, but it is completely comprehensible. Like any diagnostician, no neurologist wants to jump the gun and get it wrong (who wants to be told "Yes, you have PLS" only to learn later that he/she in fact has ALS?). The reticence to diagnose may be unsettling for the "patient," but it is also understandable (we've talked about that a lot here)! And I'm most certain that the lengthy time to diagnosis is not perceived as a "cakewalk" by most neurologists either.

2) My experience in this forum tells me that, while we do experience many symptoms in common, each of us experiences this disease differently. As the inescapably mere mortals that we are, there is not one of us here who has the capacity or wisdom needed that will allow us to understand someone else's experience with PLS, let alone try to intelligibly comprehend our own. Each of us is here for one common reason: We have a need to know that our experience with PLS is not unique, but is shared by others (PLS is so rare that medicine has a limited understanding of how people experience it in their day-to-day lives). I have personally benefited from the insights of others here - I get little else from my neurologist (understandably so).

3) It should be flagrantly clear to everyone here that while Wendy does not yet have a definitive diagnosis, the absence of this formality cannot be interpreted to mean that she does not have PLS! It only means that she's not yet been diagnosed! Al, if and when Wendy is diagnosed with PLS, she's had PLS all along -- she hasn't had the "label" -- but she still has PLS. Consider this: An individual is "formally" diagnosed with PLS. Does this mean that we can say with 100% certainty that he/she has PLS? Of course not! As per my point in #1 above, he/she may, in fact, have ALS. How many times have we heard: "You have PLS......unless, of course, it turns out instead that you actually have ALS"? A diagnosis is merely a cognitive "concept" that helps us to understand who should be in X category, and who should be in Y category. But the diagnosis in and of itself does not change the person's experience, it does not change the fact that a person actually has PLS that has gone undiagnosed, misdiagnosed, or even correctly diagnosed. Diagnosis is a cognitive concept, pure and simple, that helps us to make better collective sense of things. But it doesn't change the biology, the physics, or the psychology of the disease.

4) Wendy is right to have stepped back on this. In so doing, she fully understood the implausibility that her symptoms would just vanish --- that they would just go away. I've been through this exercise myself an indefinite number of times (my bet is that most of us have tried these mental gymnastics). But I've found that stepping back doesn't work. It just doesn't work. Why not? Because PLS symptoms are not a simple function of wishing or wanting. They are a function of being. Stepping back doesn't will PLS away. It doesn't change anything -- except that you've stepped back. When one has PLS, looking at it from the outside-in merely validates what is already known. Wendy, your symptoms are real.

5) We're here - not to challenge one another (although if you read the DIHALS threads, some people NEED to be challenged -- and they are) - but to share our understanding of this disease, if only because the medical community doesn't today have a clue. Absent the evidence-base, and confronted by the dearth of meaningful PLS-specific research (the reasons for this are clear), those of us here likely have more information about/ understanding of PLS than most practicing neurologists do (certainly more than most general practitioners, I can tell you). A neuro who has never experienced the ills of PLS cannot truly understand where the "patient" is really coming from. Lacking that ever-elusive PLS evidence-base, this forum places us in a far better position than we'd ever be without it.

And so....now: Let's cool the engines.... :)

Mike
 
Wendy,
I understand abut wanting to be able to put "it" away for awhile. Often I find the moment I feel the most normal is when I first wake up. Keep doing the things that make you happy and sane. That's called living. The time will come when you will know the truth either way.

Peace be with you,
Tracy
 
Well said, Mike. Wendy, I totally understand your angst. My hardest time is telling people (including my own grown kids) when they ask whats wrong with me is to say "The doctors don't know yet."
 
Mike has said what I was going to say...great minds think alike.
Also I agree with Cammarak....I was sent to a Rehumatologist first and then Neuro....Took 7yrs for a diagnosis.
 
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