Why to look for a diagnosed ?

[ptich]

I have this fundamental question, that may be of interest to everybody undiagnoseded with ALS-like symptoms (or with multiple symptoms, some of them being ALS-like), provided of course that the symptoms are not disabling.

It looks to me that the only rational in looking for a diagnosed is to find out if what you have is a treatable condition, and if yes - treat it. But the question is - how likely is this scenario ? From what I read, there are tons of folks going undiagnoseded for very long time; there are a lot of folks whose ALS diagnosed has been reversed, mostly for the lack of progress; but I never read of anybody who has been diagnoseded with something treatable instead of ALS, been treated, and - bingo - he/she is a symptom-free person.

May be somebody more knowledgeable can say how likely this scenario is.

 

[wright]

Well what other rationale would there be? Of course you want to be diagnosed to treat whatever is ailing you . . . and the scenario is very likely and happens way more often than not. What on earth do you think we have physicians and physician assistants and nurses and nurse practitioners and so on and so forth. Do you think they just play games all day? I'm not understanding this question at all.

To answer your other question: yes, if a condition is TREATABLE then it gets treated . . . ergo the name . . . TREATABLE CONDITION and then symptoms get better or disappear, depending on the condition. Sometimes some of those conditions simply disappear by way of the body's own healing processes.

 

[CindyM]

Maybe Pitch was thinking of those of us who have spent hours researching every symptom and comparing each clinic visit, trying to get the the bottom of an answer that may not come. After awhile it is somewhat easy to put all that aside and just let come what may, I suppose.

Or maybe he was thinking like I did early on in this journey. I decided, upon learning that I did not need treatment for any particular disease, to give up pushing for answers. It was taking too much time and we had run out of "good diseases" that could be treated. So, IMO, I am better off waiting this out, rather than frantically searching for answers. If it is anything terrible, it will show up soon enough.

 

[Zaphoon]

Allow me to chime in on this one, too.

It is necessary for me to find out what I have so whatever this is can be labeled and if treatable, treated. If I can't get this booger stopped, its going to put me out of business, literally!

Whatever this is seems to be progressing at a rate I don't like. Any progression at all is too fast! Being self-employed, I don't have workman's comp benefits. I actually thought about reverting back to call center work but my voice will no longer hold up to speaking for eight hours a day.

I have no choice and that is why I am on my 3rd neuro. The first neuro scared the pants off me (well, almost), the second was way too dismissive and just as in Goldilocks, the 3rd one is "just right". (how about another cliche' - "3rd times a charm!")

Anyway, I'm in a race against time. Arm muscles have been in a steady rebellious state for a few months now and the trudging is back in the legs. Shucks! I'm all spastic! (place contorted, twisty face here*)

Zaphoon

 

[sdsyd]

Good post. Heres' my take-
For some, labeling things or having a name to what they are facing is a VERY important aspect. The fear of the unkown can haunt even the most upstanding, educated and studious people on the face of the planet. Many people cannot readily accept that which they do not know. (though I am at this point now) It is what it is.
Its like having an elephant in the closet and not being able to introduce it.... ( Randy Pausch rocks!)
If you know what your up against, it relieves some of the worry-if it is treatable or managable - you can move forward with treatment.

AND----for some a definite diagnosis can mean they can quit furthering their misery by pushing themselves too hard at work and apply for disability. ( I am also at this point)

 

[Zaphoon]

Cindy,

Good thoughts! Hey, and as far as a name, I could care less! Just get the thing ID'd, killed, burnt and buried and lets roll on! I don't care if they call this, "OFS" (Old Farts Syndrome) which wouldn't be pretty to have to tell people.

"Kim, did you get a diagnosis, yet?"

"Yes, I did - just the other day."

"What did they tell you you have?"

"OFS and don't ask!"

Oh, you know what would be a real hoot is if my neurologist were to see this, figure out it was me and on my next visit have this conversation with me:

"Kim, have a seat, please. You may not like what I'm about to tell you. After careful analysis of all of your recent medical examinations, I and my colleagues have reached a final diagnosis for you; You have OFS!"

I digress....

Zaphoon

 

[rose]

I just don't understand the original statement: " but I never read of anybody who has been diagnoseded with something treatable instead of ALS, been treated, and - bingo - he/she is a symptom-free person."

People that get a diagnosis and find they have a treatable condition move on with their lives and away from an ALS forum.

I've not been active all that long on this forum, but just in this time I can think of Angelman Fl ... Happy... Mtngirl... I don't know how "bingo" it has been for them, but I would bet any amount of money that they're happy to be on the road to better health.

As Cindy also pointed out, for those that actually do have debilitating illness, getting a diagnosis makes gives them what they need to apply for disability. If a person is able to work, then maybe its not as much of a need, except maybe missing on the chance to get better again.

 

[lydia]

I am relatively new to the game (6 months since initial visit to GP) but I want to know if whatever is bugging me is fixable. If not, and this is where it stays, well then fine I can do this-annoying, sure, but in the big picture not that bad (CindyM-I tip my hat to you). If it is treatable...I keep thinking of the poster here whose husband has CIDP (?) and by the time they found it the atrophy was irreversible. I can't stand the thought that it (what is bothering me) is fixable and because time is a wasting that that opportunity might be lost. At the same time, I hate what going to the doctors does to me emotionally and feel like I want to banish them from my life in the same way I banished family law lawyers a number of years ago. I am on my second neuro and feel oh so tempted to move on to the third (thanks alot Zaphoon !) but am going to gamble that I will linger where I am symptom-wise like CindyM and just plain adjust to a modified life style. Things could be a hell of a lot worse...

P, I don't get your question. Of course we want to know if what ails us is treatable, even if we don't get a pretty name for it. I have started a "treatment" on the chance it might help without a diagnosis (the testing seems like a pain, but that is another story). I suspect that ALS diagnosed that are reversed to other diagnosed are rare because doctors don't take that diagnosed lightly to begin with and that they bend over backwards to make sure that the ALS diagnosed is the only option left....I still don't get your question...just because doctors don't reverse themselves often on this suggests...what exactly?

There are several of us here NOW who had ALS/MND as an initial differential diagnosis and then have been "cleared" of that and either have been diagnosed with something specific or are still searching. There are even MORE of us here who had some symptoms that overlapped with those of ALS/MND (could be limited to just twitching) and then were diagnosed with something different (I don't know...BFS maybe?). A careful reading of the archived posts will show that there are many here who have been diagnosed with something treatable....just because ALL the symptoms don't go away upon treatment (think of the BFS people, they still twitch and cramp and ache) doesn't mean their situation didn't merit a search for a diagnosed and a possible treatment.

Lydia

 

[ptich]

Write, my question was: how likely is that a bunch of neuro-muscular symptoms will end up being a treatable condition ? My impression (though I may be wrong) is that it is not very likely, though, of course, it happens. CIDP is probably when you would like a diagnosed ASAP, but CIDP is usually developing pretty rapidly, one would not go undiagnoseded with CIDP for years. MG would be another example, but MG itself is a very rare disease. In the end, if one does not get ALS diagnosed, he would most likely get some hodge-podge like MS+BFS+restless legs+anxiety, none of them treatable, so what's the point ?

Also one needs to weigh this low probabilty of getting a treatable diagnosed vs a rather high probability of the following:

1. Getting a diagnosed he does not want too eraly, may be years too early.

2. Going through painful procedures, like biopsies, spinal taps, EMG, NCV.

So I think the question is clear enough - is it worth it ?

Regarding your remarks that medical folks do not play games - well, of course they don't, but they often tend to overdo things, to run tests whose value is not statistically proven, to look at lab test results through a prism of thresholding values rather than to evaluate overall picture, etc, etc, etc. I hope I am stating the obvious. And this would also diminish a value of looking for a diagnosed, because the end result becomes even fuzzier.

lydia, you mentioned several folks who were cleared of ALS/MND; so my question is - have they been cleared of their symptoms, too ? If not - what did they gain from pursuing a diagnosed except having an enourmous stress of being initially diagnoseded with MND ?

Of course I am talking only about folks with non-disabling neuro-muscular symptoms. Once disability comes, one have to get a diagnosed.

What I would really like to see is hard stats - percentages of different diagnosis, how long on average it took to get a diagnosed, is it treatable. Then everybody could draw his own conclusions with regards to pursuing a diagnosed.

 

[wright]

You're still not making a bit of sense. Every condition that you mention is treatable.

CIDP develops slowly (not quickly as you say) and is treatable . . . it's Guillian Barre' that develops quickly and is treatable and many times resolves on its own, with symptoms completely disappearing. MG is also very treatable and the symptoms can be managed quite effectively. Most neuropathies are very treatable and can be resolved. MS is very treatable and the treatments allow people to be more or less symptom-free many times (of course there are occasional flare-ups)? BFS almost always resolves on it's own too. Anxiety is also very treatable and can be completely resolved.

Most other conditions that you are referring to have very good outcomes when it comes to symptoms. Where are you getting your information? Oh, and one other thing: many, many people on here don't have a damn thing wrong with them, they just think they do.


To address your other points:

Who doesn't want a diagnosis? Are you kidding me?

I believe most everyone is willing to go through "painful" procedures to get to the bottom of what ails them.

The answer is very clear: yes, it's all worth it. If it isn't worth it to you, then so be it.


Once again, where are you getting your information with regards to physicians running too many tests that aren't statistically proven. Do you really think that an insurance company on this planet is going to pay for tests that have no merit? What color is the sky in your world? These tests don't make the picture fuzzier . . . they make the picture more clear. Once again, where on earth are you getting your information? You obviously have no idea how the medical profession works, so please don't make broad statements regarding it without an ounce of evidence.


In regards to your comments to lydia: you are doing nothing but speculating and basing absolutely nothing on fact when it comes to those who have been cleared of MND and their symptoms. You have no idea at all how those people are doing . . . none . . . and yet you start a thread like this that is not even anectodal at best and is actually pure folly.


If you seek the facts you are looking for, then go and look for them and stop making broad statements that have absolutely no validity. And when you look for them, look in peer reviewed journal articles.


The thing that gets me the most about this thread, is that you're basically telling people on here that they're screwed no matter what. If they get a diagnosis of ALS, well you're screwed and if you don't, you're still screwed. What purpose does that have? It's very negative and makes no sense to me, especially given your statements that are not in any way backed by any evidence at all.

 

[planningguy]

Ptich,

Are you doing OK? Before I waded in I had to ask. Being undiagnosed is hard. For me it has been a roller coaster ride. Some days you feel like your body might just be on the mend, like you've turned a corner, and you're finally going to start getting your life back. Other days you feel like you're on a slow leaking ship, and you don't know how to swim. We all react in different ways.

Now your thread, which I admit I found discouraging, and wondered why start this discussion. I've tried writing the "right thing," but still haven't found the best words. I don't want to preach, I don't want to to sound overly sentimental or like a made for TV movie.

For me there are a handful of reasons why I will keep plugging away, albeit without being over the top.

First, its in my nature to fight. I've never come to an unsolvable problem, just one that takes time and adaptation. My brother was injured overseas the Christmas before this one that just past. For a year I've watched him crawl and claw his way back with multiple surgeries, in and out of the hospital with infection after infection, and having setback upon setback.

When he first started his road they were talking amputation. When he spiked fevers high enough to damage his internal organs they desperately covered him in icepacks. He's not at the end of his road yet, but he has made enough of a recovery that he might go right back to what he was doing. What I take from that (besides the fact that he is my hero), is that the fight is over when you decide its over. No, he doesn't have neuromuscular disease, but right now to my knowledge, neither do I.

Second, I won't retread what others have said, but there are a lot of treatable things out there. It would be a shame not to pursue every road, and how many people have we read about on this site that have gotten a diagnosed of ALS and fought it tooth and nail.

Third, is that I still have a young family. I made promises ot my wife I intend to keep, and my children depend on me for so much. I owe it to them to find the answers I need to give them the best life possible.

Those are my reasons for continuing to seek a diagnosed. I waffle, I get scared, and some days I almost throw in the towel. I still have hope, and I wish the best for everyone on this forum.

Take care,

Robert

 

[crystalkk]

Robert and everyone else who replied

Thank you for replies you took alot of words out of my mouth and saved me alot of typing....

 

[ptich]

Wright, of course I am not saying that you are "screwed anyway". By "not treatable", I mean that a condition does not have or require a special treatment. BFS is a good example. Anxiety is another example. So, for example, if I knew in advance that I can get only one of 2 diagnosis - ALS or BFS - I personally would not go for tests, because I don't want to know if I have ALS, and there is no practical use in knowing that I have BFS. Is there anything wrong with this attitude ?

Of course in real life there are many more diff diagnosis in every situation; so my question was - how many of them actually have treatment ?

 

[wright]

If that is what you meant, then why didn't you say it in those words initially? I think it's obvious by what the others on here wrote in reply to you, that we feel your questions weren't as simplistic as you now state.

To answer your last question here: I think I already stated that most are treatable.

One last thing: from what little information I know of you and that you're willing to share, your symptoms don't sound a thing like MND. I do know that you have claimed to have tongue atrophy (you also said your neuro didn't agree) but you would assuredly have slurred speech and you have never said you have. I also know that you have had clean EMG's and that your neuro thinks you are fine, so those are obviously good signs. I guess I want to end this by saying, I truly hope you find peace. Take care.

 

[ptich]

To be honest, I don't see any difference in my statements, and I see it as a very valid and relevant discussion for this forum: how actively one should pusue a diagnosed in case of mild (non-disabling), slow progressing neuro-muscular symptoms ? We have folks here who've been pursuing it very actively, and others who just went to wait-and-see mode. So who is right ? What are the risks ?

For example, for me the 2 most bothering symptoms currently are ataxia when typing, and attacks of fatigue. If I knew what are the chances for me to get these symptoms actually fixed if they are not caused by ALS, I could decide if pursuing a diagnosed is worth it. But if the best answer I could get is "yeah, your ataxia is probably because you have some kind of neuro degeneration, may be because of your high blood pressure", or something like that, I would not bother.