June 15, 2021 at 12:39 pm #19531Dagmar MunnKeymaster
Lately, I’ve noticed a strange trend happening in several online ALS communities I belong to. I’ve seen an increase in posts from people who haven’t yet been diagnosed with ALS asking members of the group to essentially offer medical opinions.
A typical post begins with a list of physical symptoms, followed by a statement that their doctor doesn’t think they have ALS, then a question such as, “So, what do you think I have?”
Second opinions are important. Especially when they involve serious health conditions such as ALS. But in my book, social media doesn’t qualify as a quality source for a second opinion. I shake my head in disbelief and wonder what they are thinking.
But maybe there are reasons behind their desperate queries – – and I wrote about them in my column, “When Second Opinions Get Social”
Questions for our forum members:
– Can you think of more reasons why people turn to social media for a second opinion?
– Do you think that online medical self-help sites have evolved enough for us to trust their information and advice?
June 15, 2021 at 2:52 pm #19540BillParticipant
I think you hit it with “desperate” queries. We all know the excruciating wait we have in being diagnosed. Especially for neurological disease social media no place for a diagnosis. I read everything I could about MND, ALS and mimics. There are great medical sites to learn. I was probably well educated on what I may of had and it took me 15 months for diagnosis. I didn’t ask for social media sites opinions when a neurosurgeon and neurologist weren’t able to tell me for sure.
June 16, 2021 at 6:56 am #19549GeorgiParticipant
I think the wait time between symptoms and diagnose makes people desperate. This is the only disease that physicians wait until full blown symptoms appear. Their inactiveness is not accountable based on their belief that there is no cure anyway. If only they make 2 careful EMGs in 2 months period and compare the neurogenic changes in same muscles they would make diagnose. ALS community should raise awareness which could potentially translate to clearer medical requirements on neuromuscular doctors. (Gap exists)
Secondly, there is a debate (CALS vs PALS) in the forum on whether PALS should share their own symptoms with people looking for diagnose opinion. I believe that both CALS and PALS could share their own experience as it is clearly stated this is not a diagnose.
June 16, 2021 at 2:59 pm #19554
Fear is a great motivator. And it wipes out patience!
Folks with unknown issues will always seek out answers, and that is why they are attracted to ALS forums. That is why they ask about symptoms and solicit opinions. It is because they are afraid that they might have this terminal condition and nobody wants it, because nobody wants to die. It’s akin to being afraid of getting stung when a wasp land on you, or you step on a rattlesnake. Fear does indeed motivate us.
I was in a community and kept seeing senior members tell these people they do not have ALS, and if they keep asking about it, they would ban the account. I was outraged! I cannot (nor should I) evaluate a person (and I AM NOT a doctor) and tell them they do or do not have ALS on an internet forum (or social media). In the end, when someone you help is finally diagnosed, they will remember those who helped and those who hurt them. I would rather be in the corner with those who helped.
July 8, 2021 at 12:48 pm #19833
Hi everyone, I have been away from the forum for a bit, serious family health issues, I am crushed 🙁 I just wanted to weigh in on the undiagnosed looking for opinions. Agree that fear is the motivator and also unbelievable Frustration with the medical system, seems in all countries. I agree that no neurologist wants to diagnose until there is clear and obvious evidence of ALS. I believe they hint to it and contradict themselves if you record your appointments. I have done this. Regarding a doctor second opinion as opposed to a social media second opinion, those can be utterly frustrating and useless! They are a close knit group of neuros who will not contradict each other. There is a pecking order that I can clearly see. It has happened to me. I started with a very good ALS doctor who diagnosed cramp fasciculation syndrome, then stepped down to a colleague of his who is not an ALS doctor but a neuro muscular dr. He has kept referring back to the original ALS doctor, then I stepped down further to a colleague of his who is his junior. His “second” opinion was to defer back to the “excellent doctors” I have previously seen who have not diagnosed Als at that time even though it goes back to 2017. This will give rise to people seeking answers or clues anywhere they can find them. I too am guilty of this out of desperation to know what is wrong with me although I already believe what my gut and all my research tells me. Als.
July 8, 2021 at 3:09 pm #19836Erick ScrogginsParticipant
My opinion on the subject is fairly simple from past experience. Anyone on the internet can be a self-proclaimed expert on any subject you come up with. It is not just in medicine, but most other subjects. My personal expertise is computers (since 1986). I have degrees in Computer Engineering and Networking. I have seen forums where a self-proclaimed expert has diagnosed problems with a PC that had me shaking my head in wonder. I feel the same concept applies to any kind of diagnosis one my find online. Anyone can claim to be an expert on any subject, whether they have the education and training to do so.
In my case, I started noticing a decrease in the movement of my left ankle. I had injured it a couple of times playing sports in high school, and later involving a motorcycle accident (driver tried to cross over a highway and panicked and jammed on the brakes when he realized I was there). I assumed that the loss of movement was a belated result of that collision and/or the previous damage I may have done to it. I, like many others, did some searching on the internet to confirm it as a possible answer to the problem. And some of the answers I found could be eliminated using plain common sense. Yet there were some recommendations of the probable cause and “suggestions” for combatting the problems. But none of the suggested consulting a professional about it. At no point did any of them suggest checking with my doctor to confirm it. But I also scheduled an appointment with my regular doctor.
My doctor scheduled a number of tests to diagnose the problem. I must admit that the referral to a neurologist did concern me somewhat since it was an ankle I was having problems with. After two visits with the neurologist and a number of different tests, the local neurologist gave me a diagnosis of “probable ALS” and a referral to the Duke Neurology Clinic, which confirmed that I indeed had ALS.
I guess what I am trying to say overall is that there are plenty of “experts” out there on the internet and their information is completely free. But unless they have the training and experience to diagnose your condition, the free information is just that, “free”, and worth every penny!
July 14, 2021 at 6:11 pm #19902Mark ShefsiekParticipant
I am in this situation, so hesitant to post, but I have reached the 95% confidence level.
Briefly, my first neurology visits were 2 1/2 years ago and first signs of weakness 3 1/2 years. I realize this would be a long duration onset.
I definitely present clinically with ALS and everything has be “ruled out” (including ALS until my next visit where the testing starts over again) but in a few weeks I have my 4th EMG/NCS because my symptoms continue their progression.
So I am not asking for an opinion, because I have top notch specialists, and they don’t have answers either, however, I was wondering if anyone has so many EMGs before 100% dx.
July 15, 2021 at 7:27 am #19905
My symptoms began in the summer of 2015. I have had 8 EMG/NCVs, and still am at probable ALS. Its ok, probable is still a real diagnosis.
See Gold Coast Criteria for ALS, take it to your Neuro and make them investigate. It is a new set of criteria that was adopted last year.
(close in 3 spaces)SEE:
https: // worldneurologyonline. com/article/simplifying-the-diagnostic-criteria-for-als/
July 15, 2021 at 7:48 am #19906
The most important part of the new criteria is this:
“In adopting these simplified criteria for ALS, the previous diagnostic categories of possible, probable, and definite were abandoned.”
As long as this is legitimate, and I have no reason to think it is not, then both of our diagnosis are done. This new criteria is yes or no.
I have queries out to both the MND Assoc in UK and the ALS Assoc in the USA to validate this also. Will post here in the ALS News Today forums when I get answers.
- This reply was modified 2 weeks, 2 days ago by john s.
July 15, 2021 at 8:23 am #19909Mark ShefsiekParticipant
John, thank you, I can’t tell you how helpful this is. About a year after first EMG, I finally got appointment with amazing Neurologist, (he moved and semi retired that month) that was certain. But the EMG was done by top MND specialist. At the end he said coldly “it’s not ALS maybe LEMS” and walked out and wouldn’t even answer any questions.
So it became a telephone game where that one test was the “truth.” I was recently hospitalized and one neuro Dr. Said, “Dr L said you don’t have ALS and if you did you would be in a wheelchair or dead by now.”
So now I have a new Dr.
I worked in healthcare all my life, mostly in Neuro and oncology, so I am knowledgeable and can digest Reserach. I have only known one person with ALS. Everyone thought his illness was his diabetes, until another PT friend got him to see Dr L.
Pete died last year after 18 months of rapid decline. In my research over the last two years, it seems that the slow onset, the 10% or so that live over 10 years have a very difficult time with early care.
No matter what, I always keep telling myself, one thing at a time, but it is psychologically difficult.
July 15, 2021 at 8:33 am #19910
Signed by 23 of the worlds most recognized specialists on ALS; the proposal by Scheffner stated:
“A second limitation to both the revised El Escorial criteria and the Awaji revision relates to the multiple categories of ALS that are defined. Definite, Probable, or Possible ALS are understandably interpreted by patients and clinicians as assessments of the likelihood that ALS is in fact the disease causing the symptoms the patient is experiencing. However, all three categories describe patients whose disease is in fact ALS, to a very high degree of diagnostic certainty.”
This effectively states that all three diagnosis are in fact a definitive diagnosis. This is contrary to many places that provide help/support for pALS because many of them are ignored unless they have a definite ALS diagnosis. The document carries substantial weight as medical literature, and government and medical standards need to apply the new standards and extend treatment to pALS at all levels of the previous diagnostic criteria (possible/probable). Like I told the VA, I need to be able to access resources to prepare for what will inevitably come with this diagnosis. Some people are diagnosed with possible and probable ALS, that never get a definite diagnosis. For those, and throughout the progress of the condition, they are denied resources they need resulting in financial and family disaster.
July 15, 2021 at 8:57 am #19908
One of the problems with ALS diagnostics is what they call inter-rater variability. This is the ability of the people who diagnose ALS to get the same diagnosis using the same criteria. Currently the professional standards are El Escorial revised and the Awaji criteria.
In 2018, a study by Johnsen et al. demonstrated a statistically large variation between diagnosis with over 300 ALS patients. In 2020, a proposal was published about new criteria by Shefner JM, Al-Chalabi A, Baker MR, et al. 2020. A consensus committee was formed and agreed with the proposal, and in Oct/Nov 2020, the World Federation of Neurology announced the new criteria in its newsletter, which is the link above.
2 spaces in links;
https:// http://www.sciencedirect. com/science/article/pii/S1388245720301383?via%3Dihub
https:// http://www.sciencedirect. com/science/article/abs/pii/S1388245718313877
July 15, 2021 at 2:43 pm #19915BillParticipant
I’m similar in long time between first probable symptoms and diagnosis. My first signs at least 6+ years ago maybe more. My diagnosis 3 and half years ago. Took about 18 months for diagnosis. The doctor at university ALS clinic said slow onset and could be “decades”. Who knows. I think the very slowness threw the non ALS specialists. That and a very specific singular limb affected at that time. This ALS is actually a family of diseases.
July 22, 2021 at 8:44 pm #20001
I have read the new Gold Coast recommendations for diagnosing AlS.. I can definitely say I have LMN dysfunction 100%. This is confirmed in my paperwork from my neurologist. I also believe that I do have UMN signs but that I never receive a thorough clinical exam. Many things are left out of mine. So in u ferry’s ding that they have made changes to the criteria, how are we going to get our old school doctors to implement this new criteria?
July 23, 2021 at 11:29 am #20002
Time. The MND Assn said maybe they got held up some because of COVID. I got 2 responses to inquiries on the GCC saying its strictly for research, but if it replaced the possible/probable/definite diagnosis then the EEC and Awaji Criteria also had to be for reseach. Yet, at the same time clinicians use these as diagnostic criteria because that’s what they were taught for the past 20 years.
This is only my views, the MD in Australia communicated back to me on this and did say it was research criteria. This is the guy who wrote this article for the World Federation of Neurology :
The ALS Assn never answered, nor did the US based specialists that helped write the proposal for new criteria in the links above.
July 29, 2021 at 11:58 am #20058
Seems like it’s just another article that doesn’t hold any weight so there’s not much hope they will change much.
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