Advice for diagnosis? Lost faith in physicians

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Feb 13, 2021
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Hi there,

I hope you are well and thanks again for those of you who take the time out of your days to answer questions on here - it's very kind of you. Because of the nature of this question I'd be grateful if only those who are not current caregivers or PALS would answer, since I do not want to take the time of anyone currently battling this disease. Again, thank you for the kind service you provide here.

If you've followed any of my past threads you'll know that I have been battling ALS-like symptoms for 3-4 years now, mimics have all been ruled out and I continue to decline yet I am struggling to get a diagnosis. There has been a lot of skepticism aired about my condition here in the past. All I can say is that I am not making up or exaggerating my symptoms: I really am suffering from progressive muscle weakness, atrophy and loss of function accompanied by fasciculations in pretty much every limb (including my sphincter!) which is bad enough to prevent me playing sport, exercise and perform several day to day movements. However, at present I am still able to walk and albeit with difficulty carry out day to day life. I suspect this is because my age: I am currently 26 and have had ALS-like symptoms since I was 22 (and perhaps 20, depending on how you define them), which is obviously far below the average for this disease and would predict slower progression.

I am desperate to get a diagnosis (whether it be ALS or something else) since my condition and the uncertainty is taking a huge toll on my wellbeing. Getting clarity, however, is proving a massive struggle. I would really appreciate some advice on how to get a reliable assessment for ALS since so far I have been bitterly disappointed by the expertise of the physicians I have seen. When my symptoms were really mild very few doctors would credit I had a real let alone serious condition. As my symptoms have visibly worsened I am now taken more seriously but it is proving difficult to find a physician whose competence I have faith in. The clinical exam performed by neurologists seems to vary wildly and be very subjective. The first neurologist I saw - a local neuro with some neuromuscular specialism - detected brisk reflexes, weakness, tremors and fasciculations but felt that at that time it did meet the threshhold for an ALS diagnosis. He was adamant that something was indeed wrong (and indeed said my history of symptoms as I described it made him think ALS) but that it did not meet his expectations of ALS. Since then I have worsened and several GPs I have seen have found clinical weakness on examination, which tallies with my experience with certain tasks and movements becoming more difficult, but a diagnosis is still not forthcoming. While they raised concerns about ALS (independently without my prompting) and have worked with me to rule out mimics, a recent EMG (January this year) came back clean, which frustrated a diagnosis. Most recently, I saw an ALS specialist in London but this proved the worst experience of all. He appeared to type me as an 'anxiety case' early on, paid little attention to my clinical history and his clinical exam gave me no confidence - his conclusion that I was perfectly healthy and that my issues were just the result of natural aging simply did not wash with me. I have never known anyone to have the problems I'm having because of aging (I'm 26 now 80 for goodness sake!). Since then things have continued to worsen.

I appreciate that it is easy to look at my age and difficulties with physicians and assume that I am not as ill as I say I am. I also appreciate that to somebody in late stage ALS my issues probably seem very trivial. But they are not to me. Since becoming ill in 2016 following some rare side effects from a medication (likely DNA and connective tissue damage) I have been going steadily downhill with absolutely no help or support. Despite spending massive amounts of time and thousands of pounds (all of my savings pretty much) seeing doctors and specialists of all stripes I still have no answers, only a large list of knockouts. I cannot continue to live life like this. At this point I really do not care if it is ALS I just want to have an answer so I can move on. The physical limitations I suffer from and the stress of continued decline with what feels like abandonment from the medical community is frying my head. My quality of life is poor and not sustainable for me long term.

Does anyone here have any tips for obtaining a really reliable assessment for ALS that can rule it in or out with certainty (or as good as)? Does anyone here know any doctors in the UK who are able to reliably diagnose this?

Finally, what can I do to speed up ALS - if that is indeed what it is - and so make the diagnosis easier for the physicians? As I understand there is no hope for truly effective treatment in the near future so I have no worries about losing time. My number one goal is to get this ruled in or ruled out as soon as possible, so I can move on with my life in whatever direction things may go.

Thank you again for taking the time to read this.

I just wanted to add: in my last thread a moderator posted a rather hurtful message accusing me of being deluded about my condition and sharing falsehoods about ALS. I was taken aback by this, not just because I am certainly not exaggerating my symptoms, as they suggested, but also because I posted no such things. The two comments which they took issue with - that EMG is only 60% sensitive for ALS and that chronic uncontrollable yawning is a well-known bulbar ALS sign - were both sourced from reputable medical literature. In an article 'Mimics and Chameleons in Motor Neurone Disease', Martin Turner, Oxford Neurology Professor and MND specialist, and Kevin Talbot, same, write 'EMG is only 60% sensitive for MND, however, and should not be treated as a diagnostic test, but carefully weighed up in the context of the clinical features'. Dr Paul Wicks, a member of King's College London's neurology department, writes that 'excessive yawning is common in the bulbar-onset form of ALS' in a letter to the editor of a neurology journal and Dr Lokesh Wijesekera observes ''Pseudobulbar' symptoms such as emotional lability and excessive yawning are seen in a significant number of cases'. I would have addressed this in the previous thread but unfortunately the same moderator locked it before I could reply.
Hi Falone. Sorry you are going through this. It sounds like you first got sick in 2016 and had side effects from medication and that is what started everything. 6 years is a long time to be suffering. You must be very stressed and exhausted.

Do your doctors have any insight into how to fix whatever problems the medication caused? That may be a place to start since it is a known cause of some of your symptoms.
The actual reference that Talbot / Turner cited did not give emgs as 60% sensitive but rather the Awaji criteria. So the 40 percent could have had umn signs and or had emgs that were abnormal and suspicious but did not meet Awaji. We can’t know. In the paper on Gold Coast criteria the main reasons for a non diagnostic emg noted were umn onset which is seen clinically and progressive bulbar palsy onset especially. There is also a paper by Benatar more recent than either of those showing increased sensitivity of emgs when paravertebrals are tested But to answer your question you know you need to be diagnosed by a neurologist- really a neuromuscular one There is no getting around that. Perhaps you should try to see one of the people whose work you cited as you seem to believe in them?
I would like to address a few things:

One, no one here disputes your symptoms, only that they do not fit the pattern of ALS. Where the dispute comes in is your insistence you have it despite neurologists and test results clearing you of it and your continuing to ask the people here to agree with you. This forum does not exist to provide a diagnosis of ALS to people- only neurologists can do that.

Two, it is extremely tone deaf to come to a forum that exists to provide support for people who have been diagnosed with ALS and their loved ones and caregivers and who are looking for practical solutions to the challenges that ALS brings and asking them how to make ALS symptoms worse so you can prove to doctors that you have it. It is clear you are finding things challenging, but this forum is not here to provide you with tools for self harm. You are operating under the assumption you have ALS despite having reasons for your symptoms and already being cleared of ALS.

You have reached the limits of what this forum can do for you. I suggest you seek proper mental health support while you continue to search for answers with your doctors. Not because I am dismissing your symptoms, but because your stress is causing you to cross some boundaries and you are now posting inappropriate and insensitive things to terminally ill people.
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Finally, what can I do to speed up ALS - if that is indeed what it is - and so make the diagnosis easier for the physicians? As I understand there is no hope for truly effective treatment in the near future so I have no worries about losing time. My number one goal is to get this ruled in or ruled out as soon as possible, so I can move on with my life in whatever direction things may go.
Speeding up symptoms?!
Do you have a death wish? Seriously, you need to get your head checked and I don't mean by a neuromuscular specialist. You're anxiety ist completly over the top and will stand in the way of ever getting to the bottom of your symptoms or even having good quality of life (with a terminal disease, you believe so strongly you have).
Last March you said that you know ALS is an irrational thought and then you got an EMG to clear that remaining 5% doubt. That EMG cleared you of ALS, yet you chase this (and only this) diagnosis with all your energy and money. Your said then you have badly managed asthma. Did you adress this?

You write that you just want an answer, so you can move on. Okay: You don't have ALS. (I'm not a doctor but you don't trust doctors anyway, so what's the difference?) Please move on. And please move towards the direction of managing your anxiety so you can more cleary see what's what. Every person, no matter what their medical condition, should learn to live with ambiguity and uncertainty.
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I think this person is just baiting us and the thread is best closed for everyone - the original poster and for our members, please mods.
Thank you for replying Shiftkicker. It is especially kind of you to take the time - I asked for those who were not current PALS or CALS to engage since I was wary about both the blunt nature of some parts of my post and placing a demand on those already coping with much.

All I can say in response to 1 is that I have done a lot of reading, I'm a reasonably smart and switched on person and I can find no other medical condition that can account for my symptoms. I have had a neurologist explicitly tell me that, contrary to what you say, my symptoms, as I described them to him in an email and have described them in my posts on this board, made him highly suspicious of ALS. Indeed, he told me he was psyching himself up to deliver the diagnosis but obviously didn't because on his clinical exam I was weak but did not meet him threshhold. I have not been cleared of ALS, since there is no exam that can definitively rule out ALS, as I understand it. And, as I say, I have serious doubts about the proficiency of the doctors I have seen.

As I note in my post, all the possible ALS mimics have been ruled out. Unless I have some entirely unique condition that nobody has ever reported I cannot see what else this could be - hence my concerns.

On 2: I apologise for any insensitivity on my part. That was obviously not my intent and indeed part of the reason I directed the post at those removed from current direct involvement with ALS. I hope you can appreciate this. My desire to 'speed up' symptoms in the hope of facilitating a diagnosis is a product of my situation. While I would never compare my current predicament to late stage PALS my ongoing physical issues as well as the sheer mental strain of my health declining over the past few years is not a tenable situation.

I understand your skepticism but please consider that I may be correct about the nature of my symptoms and their significance. Consider that I have ALS and am being frustrated by continual incompetence from doctors, struggling to find help and support and in addition to the physical challenges and mental stress dealing with consistently being miscast as an anxiety case, including by those who claim to offer online spaces specifically to help people like myself.

If I am eventually diagnosed I will not be the first person to post on here and be told erroneously that they definitely didn't have ALS when they actually did. Nor the first to have to deal with a period of misrecognition and misdiagnosis from doctors. I have seen many posters who have been politely and sometimes not so politely told that ALS wasn't in the equation despite them reporting what seemed like classic symptoms. Just recently a poster who sadly did have ALS posted a warning about the inconsistency of the neurological exam.

I am asking for help navigating a difficult situation that pertains to ALS and is, as I understand it, within the purview of this section, from people who are willing and able to spare the time without any negative consequences to themselves. I have tried to do so in a way that is considerate.

Thank you again for your time,

So, pardon my being blunt, you have read a lot so you think you can diagnose yourself with something as rare as ALS, more than the many, many incompetent doctors you have seen? I am glad your self-confidence has not suffered during this process. Saying that every doctor you have seen is incompetent, and you know more than them, is sure signs you are focusing way too much on a disease you have zero evidence of, to the point it is clouding your good judgement. Since you enjoy reading, perhaps look at a disease called nosophobia disorder; I think the symptoms fit much more than ALS does for you. Further, the folks on the forum who are dealing with ALS know far than someone who is not dealing with ALS. Why, then, would you ever want to take advice from someone not familiar with the disease, both over those living with it, and doctors who spent 15 years of post secondary education to work with ALS? Read your post aloud to yourself and think if it makes sense.

You have had symptoms for 4 years, yet no function failure, only perceived weakness. That is the biggest, most giant indicator that you. do. not. have. ALS. What on earth will make you accept this? I sincerely hope you find what is going on, but I can tell you that nothing you have described is ALS. For your own well being, move on from your unhealthy attachment to thinking you have this disease. You are robbing yourself of living and that is sad.

Best of luck
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