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Pat,

When were you diagnosed with ALS? You seem to have a slow case, and especially slow of bulbar.

BTW, think I once read somewhere that women get bulbar ALS initially disproportionately to men (though men get ALS overall at a significantly higher rate).

In 1999 I notice slight slurring and was Dx 2005

Pat
 
Thanks,

Wow, does this mean things didn't progress much or fast from 99 to 2005? This sort of sounds like my symptoms, as IF I do have ALS, I had some speech and swallowing symptoms going back years; just seems to be getting worse now. Also, in past had lot of fluctuations in speech and swallowing - from near normal to mild problems.

Searcher
 
My progression got bad 2 years ago in my arm first then my hands now need a walker and wheelchair for distance.
I worked abd did a 12 hour day 2 years ago

Pat
 
Pat,

How fast did the speech and swallowing symptoms progress? Did they fluctuate over time or was there slow but steady progression?

Thanks

Searcher
 
The speech progressed slowly and has been the same for 2years My swallowing isnt bad but I am very careful That started 2 years ago as well but is a slow progression as well.
I used to have fasic after 5 years into my disease I guess because it was only bulbar.
Now I hardly feel them.

Pat
 
Searcher ... the blurred vision is the big puzzle. I was first diagnosed with progressive supranuclear palsy, and my double vision, which is now a problem mostly when I read, is characteristic of that even more than MG. Then I was diagnosed with MG, though blood tests were neg. (Altho that doesn't mean too much.) Then diagnosed with ALS.

My opinion is that I have ALS plus (a little something else). PSP is actually more likely than MG, because there is more overlap of symptoms with ALS, as I understand it. But who knows. When you've got ALS, it really doesn't matter much what else you've got, if you get my drift. :)

As far as the coincidence, this article I found seemed to imply that there was a connection between the MG and ALS in these two patients ... that they were somehow linked. Which is interesting from the point of view of research.

If I can find a neuro who will monitor me while taking Mestinon, I would like to try it again. The problem is (did I mention this?) that a Mestinon overdose has the same symptoms as an underdose ... if you take too much, your prior symptoms return. So you could take more and more and be way over the limit and not know it. The neuro who prescribed it told me to take as much as I could tolerate ... double, triple, quadruple the normal dose. Then he left the country, and I had no one to consult with. And the side effects are rough. Esp the strong twitching. So I took only half the dosage to cut down the side effects. I was more or less alone with these strong meds interacting like mad (inc. beta blockers) so I was very cautious.

I'll see what happens at my next clinic visit.

Haven't met Dr. Engle, just Drs. Graves and Pazos.
 
Interesting article mentioning treatable "ALS"

Beth,

Dug up old ALS articles, including one titled "The Syndromic Nature of Amyotrophic Lateral Sclerosis" by D.r B.H. Patten at Baylor College. It is a discussion of 10 patients diagnosed with ALS who Dr. Patten and colleagues present as examples of varying conditions causing or masquerading as ALS, some treatable.

Among the case histories are two patients with suggestions of MG. One was treated successfully with mestinon, prednisone, cytoxan and thymectomy. Patten concludes that he had "an autoimmune disease with features of MG and ALS" and that "with aggressive treatment of the myasthena, the ALS syndrome disappeared. Therefore the patient probably had an ALS syndrome of autoimmune origin."

He presents a second case which had suggestions of MG findings. Treatment with Mestinon and Predinisone failed, but subsequent treatment with Cytoxan and thymectomy resulted in progressive improvement and he became essentially "normal." Patten concludes that the patient probably had a combination of motor neuron disease associated with myasthena. Both conditions responded to intensive and prolonged treatment."

This article is really something to think about, for several reasons, including Patten's main point that ALS is a syndrome, which diverse, sometimes treatable conditions can cause or mimic. If you can't find it and are interested, I could fax it or something.
This article is from the late 80's, I believe. I also wonder whether most neurologists - even ALS specialists - spend the kind of time and resources that Patten seemed to have spent searching for treatable causes of ALS, and of trying to treat these. I'd bet that there are more constraints of time and money for most neuros to look this carefully. I hope I'm wrong about this.

If I were you, I would get another opinion or ask for other treatment options, given the Mestinon response. That's just me, based on what you've said. To me, labeling something as "ALS" and basically saying "that's that; end of story" is not only unsatisfactory medically and ethically (not to mention to the patient" but in terms of scientific curiousity and rigor (or the lack thereof). A true researcher or scientist would be curious and want to know WHY you had such a dramatic response from Mestinon and not just assume that it was only treating a co-occuring (coincidentally) MG, but not a separate ALS. Since the docs don't really have a clue what is going on at the cellular level, at the molecular level, they cannot really justifiably conclude that the MG and the ALS are really distinct processes simultaneously occuring in your body. For all we or they know, there may be a syndrome that overlaps MG and ALS, with a common etiology, but which may have yet to be identified. More precisely, it may have MG and ALS clinical features or test results suggesting both to some extent.

Just my thoughts, as someone who has been reading and thinking about ALS, off-and-on, for 26 years now.

Searcher
 
Searcher

It has been some time since I read the Patten study but I will re-read it as soon as I get the time. From what I recall from the article, Patten's main point was saying that sometimes the ALS diagnosis is wrong and that the actual disease that the patient has is treatable . . . not that some people with ALS have a "treatable" form of the disease.

Regarding your thoughts about MG and ALS: I know of a few other studies that show patients having ALS and MG. It is very rare but just because someone has MG doesn't make them immune to getting ALS and vice versa. The chances of it happening are incredibly low but it can happen and does.

The criteria for ALS are very strict and no neuro (or at least any competent neuro) is going to give that diagnosis lightly. They will be absolutely sure (or as sure as they can be given the signs and symptoms) of that diagnosis. Can mistakes be made? Of course they can but those will usually come to light while following their patients.

I of course am all for second and third opinions, which is why those should be done: to be absolutely sure of a diagnosis.
 
Wright,

You raise an interesting point. ALS, by definition, is of unknown cause. If, as the cases Patten mentions, what clinically appears to be ALS responds to treating some related finding or disorder (autoimmune problem, Gammopathy, etc.) than, by definition, neuros would say that the person did not have ALS. In most cases, of course, no other, treatable cause is found. But Patten's point was that ALS is a syndrome; really just a label for an end result of a disorder of certain motor neurons. He notes, under a subheading titled "Why ALS msut be a syndrome" that "ALS is no more a disease than renal failure is a disease." He goes on to use the analogy to state that the neurologist should not be content with merely diagnosing renal failure, but trying to find its cause. If more things were identified as causing ALS (the clinical picture) in more patients, than perhaps it would change how neuros and thus PALS view the disease, moving towards the view of it as a syndrome rather than a specific disease, with the implication of a singular, as yet unknown etiology.

Since doctors, clinics and hospitals seem to have more financial, time and resource constraints, I can't help but wonder if most neuros who diagnosed ALS go through the kind of hoops Patten speaks about in searching for, and aggressively treating, anything that might explain the clinical picture of ALS. I hope I'm wrong about this, as Rose suggests. But of course if one is predisposed to think of ALS as a disease, with an unknown cause, perhaps they would be less inclined to look for causes or treatable co-factors.

This issue reminds me of other so-called "diseases," particularly in mental health. ADD, for example, is a questionable disease. Really, it is a description of certain behaviors and characteristics. That doesn't per se make this a real disease; to leap to this inference is to engage in reification, a common cognitive error. The same can be said for some other "mental illnesses."

As Patten said in this article from the 80's, "it appears so obvious that there are many causes of ALS that reviewing the evidence seems trivial." Logically, then, it stands to reason that there are other, as yet undiscovered or unappreciated causes of ALS. For example, someone recently sent me a link for an article on a case of Celiac masquerading as ALS. Hence a reason for some of the questions about possible associations that I've posed. Now, if, say, Celiac can mimic ALS, even in one case, one has to wonder whether Celiac is screened for in the diagnostic work-up for ALS. If it is not or not carefully, there would be no way of knowing if there aren't more cases of ALS caused, triggered by or exacerbated by, for example, Celiac. If a neurologist has a mindset that there definitely isn't any connection and couldn't possibly be any connection, than of course they would be less likely to look for such a possibility. I consider such a mindset more one of dogma and ideology than of science and scientific inquiry, and I'm not sure this doesn't afflict many doctors, in all areas of medicine, based on my experience.

Apologies to those who don't like reading long posts or are totally uninterested in any of this. Please just simply skip over it in that case.

Searcher
 
Thanks for the suggestion of getting another opinion on my diagnosed. I have seen 9 neuros so far, but I'm sure there are some left in LA I haven't met yet.

I do intend to talk about the Mestinon at my next clinic appt, because it was reported wrongly in my second report, and I want to clarify it and get some feedback.

But here is the thing: I have ALS. I do not want to be treated for Myasthenia Gravis ... the treatments for MG are far worse than anything I've experienced with ALS so far, and I don't think I would survive them. I'm almost 73, have heart disease and ALS. Going on a two or three year regimen of steroids and other very powerful and dangerous drugs just to prove a point about MG is a ghastly idea.

My interest in life right now is to keep on living my life. I've got so many freakin' projects going I can't keep up: I have a solo show of my paintings going on now, MUST find some time each day for painting for another upcoming show, I'm working daily on a major family history project that will probably take another year to finish, my husband is very ill, and I'm spending too much time on the Internet.

My husband has more doctor's appts than me (he has Parkinson's with dementia, and he needs a lot of attention each day). And I have keeping house and preparing meals, when I get around to them.

So if there is a link between ALS and MG, swell, but I'm not going to complicate my life further with unpleasant treatments and yet more doctors' appointments. Life is short, and it's getting shorter by the minute.
 
Good luck with your art shows, Beth. I always suspected you were talented and this proves it!
 
Beth,

You are an amazing and strong woman, I admire that. You just amaze me.....

Searcher

what do you know about celiac? does it seem the same al als? I ask because I was infected with a nasty colon infection that left me in the hospital 3x after giving birth. My bowels have never been the same. I have wondered about this.
 
I know of only one case study that linked celiac disease with symptoms that mimicked ALS. We are talking about the rarest of rare cases.

It seems all of the correlations you are making are those that are just that: incredibly rare. There is truly nothing wrong with that, but more plausible explanations should be explored first. In your case, given your incredibly long history, I can confidently say that you have not been "developing" ALS for the last 25 years.

Your cynicism of researchers, physicians and science in general is completely unfounded. Believe me, the people that are doing research leave no stone unturned as do physicians treating their patients.

I can guarantee you that the scientists and physicians researching ALS know of all studies over the past 100 years and beyond concerning ALS. When I wrote my dissertation, I was quoting studies dating back to the 1920's and was comparing it with my research . . . and I was just a mere graduate student at the time. I am 100% sure Patten's study is well known and is considered if it needs to be. Be confident that the work toward finding the cause and cure for ALS is ongoing and being done with furvor. More research has been done in the last decade than in the last 100 years. Every day that passes is one day closer to finding the answers we so desperately need.

P.S. I saw in another one of your posts that you indicated that Lyme disease might cause ALS. There is absolutely NO evidence of that. Once again, please do not speculate about things like that, because it does nothing but cause panic. That is something I REALLY take exception to on here and my Italian, Jersey temper typically gets the best of me at those times.
 
Inspiring!

BethU,

Each of your posts contains some wisdom that helps me get through my day. You are a very inspirational woman. Your positive mental attitude proves to me that it's the most important aspect in the treatment of any disease.

Maybe you could post some photos of your art work? I used to paint myself and then sort of abandoned it because of my day job, which is also creative and takes a lot of my brain power. I would really love to see your work!

Have a great day, all of you!
Thelma
 
Wright....

Thank you for writing this: Your cynicism of researchers, physicians and science in general is completely unfounded. Believe me, the people that are doing research leave no stone unturned as do physicians treating their patients.

In all the lengthy posts that I tried to wade through, this recurring theme that most researchers and physicians were missing something treatable, was the most disturbing to me. I don't mean missing the true cause of ALS, but rather that there were droves of us out there that were in effect, unknowingly having treatment withheld from them, because either:

A) What they had wasn't really ALS
or
B) What they had could develop into ALS if not treated. (the "B"premise was the most unsettling to me)

I know what I personally went through, not only with diagnostics, but with attempt at treatment, and know that my doctors wanted every bit as much as me to find a treatable cause.

I understand why Searcher would have some frustration with having had so many neuromuscular manifestations over the years, and kind of feel like he kept tossing these various hypothesis's out there in rapid fire to us, because he'd been consumed with searching for proof of deliberate oversight by our "mainstream" (for lack of a better word) researchers and physicians.



Beth,

You already know you're my hero. I just wish I were closer, I'd help you with Paul. Congratulations with the show, hope you have a good turn out! :)
 
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