Nikki, if I may. I found a paragraph I feel is very important...
(Many AOTs claim to benefit people with ALS. The most common “proof” of such benefit is called an “anecdote”. Anecdotes are stories of people who tried something and then experienced an effect (usually a positive one) they attributed to it. There are several problems with anecdotes in ALS. First, it can be difficult to prove that an anecdote even represents a real person. There are examples of companies having fabricated anecdotes to sell their products (43). It is even more difficult to prove that the person in the anecdote had ALS, and to prove that something important actually changed in them in an objective way.)
There are a lot of people who believe they have ALS regardless to have been diagnosed with MS
Parkinson's Disease and others. I've seen it here on this forum. Diets, supplements, OTC meds, regiments,
swimming even forms of off the wall PT. Nothing will stop the progression of true ALS. It may slow down
but ALS is a terminal disease.... so it's been declared.
Whatever... for what it's worth for those who may read this.
I agree with what you've said, Al. The amount of alternative medicines or lifestyles pushed on those with ALS is, quite frankly, disgusting. Desperate people will try anything, and it's the folks pushing this quackery right there with their hand out. Not only do they bleed these people dry, but the person living with is is left deceived and broke because of it.
A friend was swindled out of 250k from an ND and left without a penny to use towards medical costs he so desperately needed. They kept telling him he had elevated iron and Lyme disease, not ALS. He died, trapped in his house, in his recliner (where he basically lived). It was heartbreaking to think of the medical equipment he could have bought to make his life easier.
My hubby and I chose to create memories instead of trying AOTs. Because we have been blessed to do this, I believe it's helped Wayne extend his life, as our plans give him something to look forward to.
It is very sad to see people spending large amounts of money and time and energy on things that to us are obvious scams.
on the other hand I think a lot of us try various things - supplements, diets , exercise. Those of us who plateau or progress slowly are especially likely to think whatever helps but we can’t know. As someone who is FALS I can look to family history but that tells me nothing. My aunt took nothing ( riluzole came out when she was already diagnosed and she decided it wasn’t worth the cost) and only had a feeding tube. She progressed very slowly - slower than me so maybe what I do hurts rather than helps. However my sister who tried some things ( different than what I have tried) and took riluzole was dead in 4 years if I was destined for her course my plan is working fantastically.
research the theory behind anything you try and talk to your neurologist.
also remember as Bestfriends says there is value in quality of life and a having things to look forward to does seem to make a difference sometimes
I don't like generalizations. Nikki's article was relevant and made sense. Not all NDs are bad. My second career was going to be an ND because I saw a need to specialize in nutrition, especially after getting horrible advice from Mayo Clinic and general lack of knowledge of nutrition from other doctors.
Many people swindle PALS out of money. Even MDs. Why would a doctor perform 7 EMGs very close together on a patient when they were all normal? One doctor performing on one patient? That's an insurance swindle.
I won't dash hope from PALS trying alternative means if they can afford it. Perhaps there will be a medical cure one day but, for now, hope is all we have.
ALS is so variable among different PALS. I try not to use generalizations such as "twitching and cramps mean nothing" because that's how I started out. I have no idea why my progression slope is so flat but I'm not stopping the supplements anytime soon.
Kim, it will remain true that "twitching and cramps mean nothing in themselves." And, of course, any doc running serial normal EMGs as you describe should be referred to their State's Medical Board.
As to affordability, AOTs cost time and the emotional energy of hope as well as money. I helped out a billionaire PALS, who was as interested as anyone in making family memories, not running through an Internet's worth of theories/schemes, as BestFriends describes. And, as discussed in another thread, if someone has those kind of resources, they could be enlisted in actual scientific research if not required for personal needs.
Judicious use of supplements to complement the mobility devices, adaptive aids, respiratory support, nutritional status, social support, and non-ALS medical maintenance that a PALS needs is a logical way to go. Putting all your resources on [what is usually billed as] an Establishment-scorned, cure-all-if-you-take/do-enough-of-it is a purely emotional response, as you point out. Thus, like any action undertaken in that context, that is not risk-free, it merits some extra thought.
I would like to add my two cents on the issue of fasciculations and cramping. I do think the phrase “Twitching and cramps means nothing” without the addition of a simple phrase like “in the absence of other clinical symptoms and/or diagnostic tests” would help the new posters with what appears to be a recurring source of confusion.
Here is what we know and anyone that fears a possible diagnosis can Google: 1) Fasciculations and /or cramps are quite common and about 80% of the population experiences these benign events, either sporadically or persistent; 3) By contrast, ALS is a rare disease so the overwhelming majority of twitchers have benign or treatable conditions; and 3) fasciculations and/or cramps alone without clinical symptoms showing both upper and lower neuron involvement is not the basis for an ALS diagnosis (true PLS and PMA excluded).
The confusion arises from the fact that for a not insignificant number of people eventually diagnosed with ALS, twitching and cramps in the absence of the other criteria for diagnosis precedes the development of the accompanying symptoms that eventually lead to that diagnosis. Many experience functional failure either before or concurrent with twitching or cramps, but the ALS Forums are filled with pALS that experienced one or both weeks, months, or even longer before clinical weakness or functional failure was confirmed by neurological testing. Not everyone starts with foot drop, inability to open a water bottle, or slurring.
Although I am a rare subset that started with body wide fasciculations, my first two clinical exams showed no clinical weakness or reflex abnormalities. It wasn’t until four months after my twitching started that clinical weakness was detected along with an abnormal EMG. I could cite dozens of pALS whose first symptoms before their eventual diagnosis was twitching, cramping, or both.
That is often the reason that most neurologists adopt the “wait and see” approach in the absence of the full range of criteria needed to confirm the disease. In my opinion, the absolute statement of twitching means nothing needs context and further explanation.
@KevinM I agree that the wait and watch approach makes more sense than I initially thought. After seeing riluzole’s effect mainly in stage 4 and radicava only working on a subset of pts it does make sense to wait so that Pt quality of life is preserved. Hopefully AMX0035 changes things in that regard with their 49% change to onset of tracheostomy.
Just a note that the "criteria" are more than symptom-based, Kevin -- they include an EMG and appropriate ruleouts from labs and imaging, not just a laundry list of issues. No neurologist has to "wait" past twitching and cramps to make a diagnosis. There's no strategy like that. You can't even code "possible ALS" on a discharge sheet.
If they don't have enough evidence to consider ALS, then they don't. When they do, they do. And then they diagnose it or not.
So if I have one piece of advice for anyone who's worried about ALS, it's this: don't read symptom lists from anyone, here or elsewhere on Google. If you're worried, get checked out, because the odds are, you have something treatable or nothing at all. And you are not in a position to figure out the difference from lists, anecdotes, or YouTube videos.
Twitching and cramps are ridiculously common features of the healthy, so from a search standpoint and emotional distress, it would hardly be wise to connect them any further with a fatal disease. People who need to rule it out will ultimately have way more wrong.
Aaron, the current consensus is that riluzole works best when given early. I think you may be reading some older research that had a lot of technical limitations (like way less computerization than now). But just as in any serious disease, P/CALS' quality of life is generally improved when possible relocation, finances, legal documents, work, family, friends, and other logistics are addressed as early as possible, in time to leave room for stuff like adapting to the disease.
There is also no biochemical justification for delaying diagnosis -- no treatment works better later in the course of the disease. In fact, delaying or ignoring a diagnosis or abnormal clinical findings may leave one open to later health/life/disability/long-term care insurance reimbursement denial if the payor can demonstrate you had issues/visits/advice that you didn't acknowledge on documents.
But, neither, in most people, is there any longer some huge delay, presuming they have access to modern health care (as even a Medicaid-funded visit would provide, given clinical findings of concern) and are actually committed to the diagnostic process (some people delay, go into denial, doctor-shop, fall into quackery, etc). So the notion you have to snap your head up at the first twitch is just very wrong and causes a lot of unnecessary distress via search.
What we do see here, more often, is people with normal findings or minor abnormalities or some other health issue, whose subjective belief or overwhelming fear is that they have ALS. They can leave the false impression that the diagnostic process is necessarily torturous, or unusually prolonged in their case, and thus that ALS is very difficult to diagnose.
Health anxiety and obsession with a given condition are serious issues that can be lifelong if not treated. That's why we don't validate or enable them here. Unfortunately, ongoing sufferers ultimately build their own prisons and wreck their own lives, which can be really frustrating for those whose lives are actually changed forever by an incurable disease.
Sorry to be blunt, but if there's anything that most P/CALS know, the reality that they share, is that life is too, too short to be spent in delusion.
Good points, Laurie. I didn’t mean to imply that the criteria was only symptom based. When I said ”…in the absence of other criteria for diagnosis“ I was including EMG’s, bloodwork, MRI’s etc.
I agree that there should be no good reason for anyone concerned about symptoms to delay seeking appointments with their physicians. Unfortunately, most of the delays occur on the physician side, as there are two few doctors and too many patients in virtually every field. According to the ALSA, the average time to diagnosis is 9-12 months from symptom onset. Some of that may be patient delay, but mostly it’s because it takes a long time to get appointments. Hopefully the new Gold Coast criteria for diagnosis will reduce the delays.
With my wife’s recent surgery, we asked the anesthesiologist if he would be in the operating suite during the entire surgery and he said he couldn’t because he has to oversee four other surgeries at the same time. He said he was more like the “expert consultant” that would come in if there were issues. He said its a different world now with doctor and other healthcare worker shortages.
Staying away from Google or other places that list MND symptoms is great advice, but in practicality that won’t happen.
Kevin, you mentioned 9 to 12 months. Many get a confirmed diagnosis very early from an
initial clinical exam and then an EMG. So often the EMG has been called the Gold Standard
for confirming true ALS. Yes, some may fall into that 9 to 2 months but many go as I have
written above going to a certified ALS neurologist. As well if they chose a second opinion.
If undisputable evidence is there... the diagnostic code for ALS is written.
The reason my diagnosis took so long is that I was only weak in one area. My EMG (Mayo Clinic) was classic for ALS yet Dr. Boylan felt like he needed to see more clinical evidence. I am lower motor dominant so I had lack of upper evidence at Mayo (except the reflex in my left knee). Boylan had a reputation of never diagnosing someone with ALS incorrectly so I understand his wanting to be absolutely sure. Johns Hopkins found more weakness than Mayo but it was on the scale of 4 or even 4+. The EMGs were never in question but they repeated them before making a diagnosis.
I was diagnosed 12 months after my first symptom and six months was due to my own fault of believing nothing was wrong with me. Being a runner and competitive athlete, I had experienced cramps before. Twitches were new to me. I never even had a twitch in my eye before but I figured it was just something harmless.
Experiential evidence. Each of us has a different story. Those I've interviewed all have different stories. None of them have happy endings.
And I couldn't agree more that quality of life is very important.
I have a support meeting at 1:00 today about home health care. They're still on Zoom. Just as well.
in the whole history of ALS there are something like 40 "documented reversals". Just about nothing in common amongst them. That represents lottery type odds. Yet with zero options, that can still look attractive. Dr. Bedlack at Duke has organized several trials and keeps an enormous list of compounds to try. Most of them are relatively inexpensive. Alas none of the trials are reporting results yet.