When Second Opinions Get Social

Dagmar Munn avatar

by Dagmar Munn |

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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.

A combination of pressures

Perhaps the pandemic experience, with its lockdowns and Zoom calls, has lulled us into familiarity with online “experts.” The explosion of health webinars, videos, and other social media content has provided a soapbox for all to voice an opinion. It’s enough to come down with a good case of information overload.

Then there’s the long process of getting a final diagnosis, since ALS has no definitive test. Instead, patients endure what feels like endless scans, exams, and procedures just to rule out everything else before ending up with ALS.

Finally, I also think it’s a lot of plain old worry. Our imaginations are kidnapped by negative thought loops. We dwell on worst-case scenarios and follow online rabbit holes in the guise of wanting to “research our condition.”

Get used to waiting

I wish I could tell these not-yet-diagnosed folks that once they’re diagnosed, no bells start ringing and no sirens go off. They won’t be rushed to the nearest hospital for an emergency procedure or enrolled in a physical therapy “rehab and recover” program. Their doctor will most likely tell them to go home and wait.

Living with ALS means waiting for symptoms to progress or a new batch to show up. With only two treatments for ALS — and those only help to slow down symptom progression — we’re vulnerable to still more worry and concern.

My advice?

I avoid getting pulled into giving medical advice and always urge people to seek out a medical professional. I also recommend folks create a trusted circle of care, which would include people they know rather than people they met via social media. Trusted people could include one’s doctor, an ALS Association care coordinator, and family members.

Another recommendation is to start adding healthy habits into daily life, including good sleep, quality nutrition, gentle exercise, and relaxing the mind and body. These will immediately help to regain control over needless worry, and later, they’ll help if a diagnosis is received. I give credit to these healthy habits for helping me to successfully live with ALS for the past 11 years.

Finally, limit online activities, pick one trusted news source to follow, and sign up for their newsletter. I suggest ALS News Today.

Asking strangers for their opinions about healthcare decisions is risky.

If you or someone you know is struggling with anxious, negative thinking, try my suggestions. Let’s learn to live well while we live with ALS.

***

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Comments

Mary Connolly avatar

Mary Connolly

Totally agree on this one—no need to share mutual ignorance. What is unfortunate is the amount of time it takes for diagnosis. In retrospect, I might have further and more aggressively questioned the initial evaluation of the local neurologist who gave a differential diagnosis of motor neuron disease. MRI's revealed spinal cord compression for which cervical spine surgery was performed. But I wonder what would have happened had the complete battery of blood tests and a full body EMG been performed (by the expert who performed it over a year later) when strength in my husband's arms did not return and continued to decline, albeit slowly. I know these tests are expensive, but early detection does make a difference with respect to quality of life and access to clinical trials which often have restrictive exclusion criteria. The diagnosis staging includes possible ALS, probable ALS, and definite ALS and I wonder if neurologists, spine surgeons and physicians need to be more aggressive in their approach to diagnosis—I think so. Would it have mattered if we found out about a possibility of ALS a year earlier? I think so. The reality/possible reality of diagnosis would have been no less devastating, but maybe we would have taken a slightly different path regarding our home remodel, physical therapies, clinical trials, and network/resource development. Live and learn--emphasis on the living part. Thanks Dagmar for your writings!

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Dagmar Munn avatar

Dagmar Munn

Thank you for your comments, Mary. I'm sorry to learn that you and your husband experienced such an indirect path towards receiving his final diagnosis. But you are correct. Early detection and diagnosis would help patients and families make important life/living decisions earlier rather than later. I understand that some physicians want to spare their patients the emotional toll of being told they have ALS - - but I believe most patients would prefer to know the truth as early as possible. Best wishes to you both.

Bunni Rose-Walls avatar

Bunni Rose-Walls

I’m glad you brought it this up! I for one would NEVER ask to join a support group of such serious nature as ALS if I were not formally diagnosed ! What is wrong these people ? We are not doctors! We can compare symptoms all day long but it’s wasting everyone’s time. I know this is also irritating to other REAL Pals and Cals. I wish moderators could sniff these leaches out along with the spammers who promise healing and reversals!. I force myself to scroll on by theśe people but what I really want to do is smack them with my hands and arms that don’t work anymore! Hey, if you truly have ALS, I am here for you all day long. WE ALL ARE! But if you think you MIGHT have ALS and you’re not sure and all you want to do is compare notes with someone who has actually truly has it after they’ve gone through months and months of testing and waiting scared out of their minds for a formal diagnosis, you are so very out of line! You don’t come to a support group for people that ACTUALLY have this horrific disease! Don’t do it! We cannot diagnose you…and you better pray to God that you DON’T have it!!! On another note, for those of you trying to scam//sell us your bullshit and false hope about healing and reversals, GO AWAY! We’ve got your number too! 🖕🏻

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Dagmar Munn avatar

Dagmar Munn

Bunni Rose-Walls, I love your style! You hit the nail on the head. Thank you for your support and for sharing your honest thoughts. ;-)

Johnny5 avatar

Johnny5

I think Fear is a huge motivator. In the absence of certainty, that fear explodes. People need answers, they do, but they seek to find them in all the wrong places. It is best to give comfort and advice as Dagmar talks about. Lead them down the road of common sense I think is a great way to phrase it.

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