Legs weakness

[ahimsa]

... it is not a good idea to use the forum as a help to understanding personal problems like this. None of us have enough information about the individual case to contribute medical advice. The last thing we want is for symptoms to be put down to ME when they are due to something else.

Wow, I hope that it is obvious that this forum is not meant for handing out specific treatment advice to patients! I'm kind of surprised that anyone would think this.

I hope we can discuss our own symptoms and personal experiences without having to write a big disclaimer "I'M NOT A DOCTOR, THIS IS NOT TREATMENT ADVICE" on every post. But if that's necessary then I can update my signature.

I have found it helpful in the past to learn from other patients so I can have a better idea of what questions to ask my doctors. For example, that is how I learned about the tilt table test back in 1995. My own doctors never thought of that test but when I presented it to my cardiologist he agreed it made sense.

But I've never used an online forum instead of asking a doctor. I would think that kind of thing would be pretty rare?

Edit: Hope my message does not come across the wrong way. I'm just surprised that any patient would use a forum this way. It could be that this is more common than I realize and such warnings really do need to be made for new forum members.

 

[Jonathan Edwards]

But I've never used an online forum instead of asking a doctor. I would think that kind of thing would be pretty rare?

Your message comes across as very reasonable, @ahimsa. However, on another forum some of us used to frequent it was commonplace for patients to recommend treatments that others picked up and loads of people were taking alls sorts of weird and wonderful stuff. Which, at least for me, is why I am now on a different forum. But the way it works is sometimes subtle - like recommending a particular doctor who peddles pseudoscience. A number of people managed to get themselves treated with rituximab, despite the doctors who had initially tested it asking for this not to happen. Now we know rituximab has no useful effect. Lots of people ended up on anti-vitals, which as far as we know are of no benefit. So there was nothing pretty rare about this.

As far as I can see the poster starting this thread was uncertain whether or not they had been given the right diagnosis of radiculopathy and wanted opinions on whether the symptoms might be part of ME. As a doctor I am very aware that you simply do not start to get involved in answering that without having taken a full history and done a full medical exam. There are too many unknowns. One of the things PWME are most concerned about is symptoms being put down to ME when they are in fact due to something else so I guess I worry it is unhelpful for other PWME to say yes they have that too. It is very easy to be reassured by such comments and maybe entirely inappropriately.

On this particular forum we do not seem to get into any problems with this. But sometimes it may be useful to be reminded just how easy it is to reassure people when that is the wrong thing to do. I have made that mistake as a doctor too many times for comfort.

 

[dannybex]

As far as I can see the poster starting this thread was uncertain whether or not they had been given the right diagnosis of radiculopathy and wanted opinions on whether the symptoms might be part of ME.

I believe that's all we were trying to do too -- tell her if they 'might be a part of ME'. And it might, according to the Canadian Consensus Criteria.
I didn't see anyone diagnosing her, but I could've missed something I guess.

 

[Valentijn]

I believe that's all we were trying to do too -- tell her if they 'might be a part of ME'. And it might.

True. But sometimes the true answer isn't the right answer It might be a symptom which some ME patients have, but it definitely needs to be looked into by a doctor regardless.

 

[Jonathan Edwards]

I didn't see anyone diagnosing her, but I could've missed something I guess.

Having had life threatening illness missed in my own family by me and others because it was easier to say that the symptoms might just be due to something already presumed present has taught me to be very very careful. I am not sure that the Canadian Criteria are very solid ground even for an expert physician to base an opinion about being due to ME on. The rule is always to presume that all the unexpected possibilities may apply before putting something down to something by exclusion.

With radiculopathy there is a precise pattern of signs that either fit or do not. That does not apply to ME.

 

[duncan]

I am not sure that the Canadian Criteria are very solid ground even for an expert physician to base an opinion

Yeah, sadly, there are not too many of these, are there? I imagine there are far more expert ME patients, and many frequent this forum. As it is a forum, discussing symptoms, while refraining from making diagnoses, would be expected. As ME/CFS is a syndrome by some definitions, it's not too surprising that it is symptoms, collectively or individually, that may form the crux of many forum discussions.

 

[dannybex]

True. But sometimes the true answer isn't the right answer It might a symptom which some ME patients have, but it definitely needs to be looked into by a doctor regardless.

Of course. I just didn't see that anyone told her not to go to a doctor.

 

[dannybex]

Having had life threatening illness missed in my own family by me and others because it was easier to say that the symptoms might just be due to something already presumed present has taught me to be very very careful.

Understood.

I am not sure that the Canadian Criteria are very solid ground even for an expert physician to base an opinion about being due to ME on.

Well, I guess we'll have to agree to disagree on that one.

 

[ahimsa]

[note to moderators - should this be a new thread? it seems off topic but then I notice that some threads tend to wander a bit, so it may be okay?]

Your message comes across as very reasonable, @ahimsa. However, on another forum some of us used to frequent it was commonplace for patients to recommend treatments that others picked up and loads of people were taking all sorts of weird and wonderful stuff. ... A number of people managed to get themselves treated with rituximab, despite the doctors who had initially tested it asking for this not to happen. Now we know rituximab has no useful effect. Lots of people ended up on anti-vitals, which as far as we know are of no benefit. So there was nothing pretty rare about this

Thanks for your reply. I realized after I posted (which is why I added the edit) that things can be more complex than they seem at first glance. I certainly don't want to unduly influence someone in the wrong way.

As far as I can see the poster starting this thread was uncertain whether or not they had been given the right diagnosis of radiculopathy and wanted opinions on whether the symptoms might be part of ME. As a doctor I am very aware that you simply do not start to get involved in answering that without having taken a full history and done a full medical exam. There are too many unknowns.

I see what you are saying. And yet, I think there are times when it might be helpful to listen to other patients' descriptions.

It's not that the other patients are actually trying to diagnose anyone online (at least, I was not trying to diagnose the patient who posted). It's just that patients are sharing experiences.

I guess I generally give patients more credit that they can read this information, understand the context in which it was given, and then talk with their doctor and make their own decisions about their care. This shared information might spark an idea that could be quite helpful.

When I first got sick I went for 5 years without any diagnosis at all (or maybe a few tentative diagnoses that then later were discarded, not sure, memory is a bit fuzzy). I saw so many different doctors who took a full history, did medical exams, etc. None of them had any answers.

I don't blame the doctors. They tried! (Well, most doctors tried, leaving out the bad stories to keep this short).

It was only by listening to ideas from other patients (most ideas did not apply to me at all, of course) that finally led me to a diagnosis. It was only by listening to other patients that I learned about the tilt table test and found out that I had orthostatic intolerance (OI). And that led me to finding some treatments. But even without any treatment just knowing that I had OI helped me because then I knew to avoid things (heat, standing) that trigger my OI symptoms.

I don't know how long I would have gone without a diagnosis if I had only gone to doctors and never talked with other patients to compare symptoms and diagnoses to see if they matched my own experiences.

I guess I worry it is unhelpful for other PWME to say yes they have that too. It is very easy to be reassured by such comments and maybe entirely inappropriately

I think it makes sense to try to be careful but I don't think we should refrain from sharing experiences and symptoms. A patient should be able to say, "Well, here's my experience" but at the same time there should be the realization that we're all different. Even patients who share a relatively well known illness that has a well defined treatment might have different reactions to meds, for example.

Just some rambling thoughts.

 

[TiredSam]

A reminder of rule 5, purely for information purposes (ie I'm not saying that anyone's breached it or needs warning about it, just that it's a bit of information that fits into the current exchange):

Rule 5: No medical advice
Members may offer or request opinions and personal experience regarding seeking a diagnosis and treatment, but they may not diagnose or recommend treatments to each other, nor request such diagnoses or recommendations. Treatment recommendations are also inappropriate if contained in a protocol which purports to be broadly applicable based upon a diagnosis or other characteristic, or includes a process for determining which people should try specific aspects of the protocol.