When is it ok to ignore "Life threatening" symptoms

[MeSci]

@MeSci I am so glad and that is great news! Keep us posted re: the brain scan and what you learn.

Just a quickish reply as I have spent ages trying to catch up on everything, having been out for 7 hours yesterday including travel to and from the hospital.

MRI brain scan and carotid Doppler ultrasound (neck blood vessel/s) were said to be fine. Neuro thinks I had migraines. I've never had these before so will do some reading-up on them to see if the diagnosis fits. But I am quite reassured for now that they weren't TIAs.

Neuro was weird and creepy, and when he asked if I had any other conditions I reluctantly mentioned ME. "What's that?" he asked. As I found it very hard to read his facial expressions, I wasn't sure if he was being sarcastic or sceptical, or had genuinely never heard of ME. So I said it again, and he asked "What's that?" again. With a sinking feeling I said "Some people call it Chronic Fatigue Syndrome." He then muttered something unintelligible and said no more about it.

So that's the quandary that is the crux of so many of our problems with symptoms that may, or may not, 'just' be ME. Do we risk mentioning ME or not? Will various doctors put us down as psychiatric cases if we do, and thus ignore everything we say thereafter?

Oh - and the neuro thought it was strange that I kept a health diary. Yet it was clear that I had to refer to it to answer some of his questions - increasingly so as I became more mentally tired and less able to remember the symptoms, chronology, etc. of my possible TIAs. Yet he got impatient when I tried to find the info in the health diaries so that I could answer his questions, and said it wasn't necessary for me to consult it. And I couldn't dare mention brain fog because that is an ME symptom.

That's after he had asked to look at the sections where I had become unable to find the right words (this was the main suspected TIA symptom) and had lines of words crossed out.

I felt as though I was with a rather hostile alien.

 

[MeSci]

Do you have any tips for finding doctors who know what to look for ? And avoiding those who don't ?

Thanks. X

a dowsing rod?

 

[PennyIA]

That's after he had asked to look at the sections where I had become unable to find the right words (this was the main suspected TIA symptom) and had lines of words crossed out.

I felt as though I was with a rather hostile alien.

Sadly, I've experienced this all too often. Not being able to find words, or using the wrong words.. which fwiw is typical of B6 deficiency neural damage...which any nuerologist should be able to spot a mile away.... is something that they brush off and ignore. And having things written down? SHOULD be helpful. I'm sorry you've been through this.

I was initially mis-diagnosed with migraines when I first had some of my health issues (balance, blurred vision, right side going tingly)... which later got mis-diagnosed as a stroke when they went from intermittent issues to a period of around 3 years of constant issue... which later got diagnosed by me due to B6 toxicity. I was taking OTC B6 (not P-5-P) and had become toxic on it because my body couldn't break it down. Once I stopped taking it - these three symptoms started to fade. Once I started methylating properly I started healing and the symptoms are completely gone at this point.

 

[Gingergrrl]

@MeSci

Just a quickish reply as I have spent ages trying to catch up on everything, having been out for 7 hours yesterday including travel to and from the hospital. MRI brain scan and carotid Doppler ultrasound (neck blood vessel/s) were said to be fine. Neuro thinks I had migraines. I've never had these before so will do some reading-up on them to see if the diagnosis fits. But I am quite reassured for now that they weren't TIAs.

I am glad that you got it checked out and are not having TIA's. That is great news.

Neuro was weird and creepy, and when he asked if I had any other conditions I reluctantly mentioned ME. "What's that?" he asked. As I found it very hard to read his facial expressions, I wasn't sure if he was being sarcastic or sceptical, or had genuinely never heard of ME. So I said it again, and he asked "What's that?" again. With a sinking feeling I said "Some people call it Chronic Fatigue Syndrome." He then muttered something unintelligible and said no more about it.

I have had only terrible experiences with neurologists with the exception of my best friend's neuro (she has epilepsy) and he is wonderful when I have taken her to some of her appts in years past. But the ones I have seen in the past were horrific.

So that's the quandary that is the crux of so many of our problems with symptoms that may or may not, 'just' be ME. Do we risk mentioning ME or not? Will various doctors put us down as psychiatric cases if we do, and thus ignore everything we say thereafter?

I kind of play it by ear and use my instinct in the moment. I try to assess if telling a new doctor will add anything to my case or detract from it. No doctor in the U.S. will have heard the term "ME" so we are left with using "CFS" which has a horrible stigma due to misinformation. I often just say that my health issues all began with severe mono two years ago and I've had re-activated EBV (with blood tests to prove it) which started my cardiac and autonomic issues. This often goes over much better.

Oh - and the neuro thought it was strange that I kept a health diary. Yet it was clear that I had to refer to it to answer some of his questions - increasingly so as I became more mentally tired and less able to remember the symptoms, chronology, etc. of my possible TIAs. Yet he got impatient when I tried to find the info in the health diaries so that I could answer his questions, and said it wasn't necessary for me to consult it. And I couldn't dare mention brain fog because that is an ME symptom.

Well, that is his problem and it is great that you keep a health diary. Don't let his ignorance stop you from doing what you need to do.

I felt as though I was with a rather hostile alien.

I have felt that way before, too. Back in 2010 when my right arm was injured by Levaquin, I brought some articles re: Levaquin tendon damage to a neurologist. He refused to look at them and said, "Well, I have never heard of this" (therefore discounting the scientific journal articles that I had brought- which were not written by me!) He was supposed to do an EMG and nerve conduction test on my arm. I started to ask him a question and he said, "Just be quiet and get onto the table." (I kid you not and I should have just walked out but I felt desperate for the help and afraid I would never regain function of my arm- which I did but no thanks to him.)

 

[Gingergrrl]

@xchocoholic

I might be understanding this now ???? So if we're having "life threatening" symptoms regularly that didn't kill us right away then the plan is to look for causes.

I really do not have a hard and fast rule and can only speak for myself. My feeling is that just b/c we have ME/CFS, it does not exclude us from having other medical issues (which could be life threatening.) When I saw my new cardio and he told me that my exercise echo had shown ischemia and saw my shortness of breath just trying to walk down the hall, he felt it was imperative to check for other causes (which I had never done b/c I had also felt it was all due to CFS.) I don't know if he even believes in ME/CFS, but he is an autonomic specialist and he didn't want to attribute my issues to dysautonmia without ruling out other cardiac causes. I hope that makes more sense now.

But finding doctors who can properly diagnose the cause of these " life threatening" symptoms isn't easy.
I've certainly wasted too much time on doctors who didn't know what to look for. I realize that in some cases there aren't any tests that would point to a solid dx. But I've also seen tests not being utilized.

I agree and I have also wasted a lot of time with doctors who dismissed me or were unable or unwilling to help me.

Do you have any tips for finding doctors who know what to look for ? And avoiding those who don't?

I wish I did and the only thing I can say is to trust your instinct. The doctor is not God or an authority figure to be followed at all cost. When I have a doctor listen to me and treat me respectfully, that is the first sign (for me) that I want to listen to what they have to say. When they are rude or dismissive right off the bat, I no longer waste my time with them.

Also, in the past, I chose doctors just b/c they were closer to me geographically which I no longer do. My new cardio is quite a distance from where I live but he is worth the travel. In the past I would never have traveled six hours to get to OMI, but it was the best thing I have ever done. So now I do research and choose the doctor based on their expertise and experiences reported by other patients (not because they are close to me geographically) and I no longer blindly listen to someone ignorant or disrespectful out of desperation.

I don't know if any of that helps and wish I could do or say more!

 

[MeSci]

Sadly, I've experienced this all too often. Not being able to find words, or using the wrong words.. which fwiw is typical of B6 deficiency neural damage...which any nuerologist should be able to spot a mile away.... is something that they brush off and ignore. And having things written down? SHOULD be helpful. I'm sorry you've been through this.

I was initially mis-diagnosed with migraines when I first had some of my health issues (balance, blurred vision, right side going tingly)... which later got mis-diagnosed as a stroke when they went from intermittent issues to a period of around 3 years of constant issue... which later got diagnosed by me due to B6 toxicity. I was taking OTC B6 (not P-5-P) and had become toxic on it because my body couldn't break it down. Once I stopped taking it - these three symptoms started to fade. Once I started methylating properly I started healing and the symptoms are completely gone at this point.

I'm not 100% sure that my 2-3-hour dyslexic spells with headache, nausea, visual disturbance, vertigo, etc., were migraine but a lot of things fit. I don't recall the headaches being one-sided or throbbing though - I didn't write that down anyway. I am 61 and have never had migraine with headache before, although I have had two spells of what I think is the visual phenomenon scintillating scotoma with no other symptoms, which the neuro thought suggestive of migraine. I am 61, which is relatively late to start getting migraines.

Re B6 deficiency, that wouldn't show as two discrete spells of 2-3 hours each, would it?

 

[PennyIA]

I'm not 100% sure that my 2-3-hour dyslexic spells with headache, nausea, visual disturbance, vertigo, etc., were migraine but a lot of things fit. I don't recall the headaches being one-sided or throbbing though - I didn't write that down anyway. I am 61 and have never had migraine with headache before, although I have had two spells of what I think is the visual phenomenon scintillating scotoma with no other symptoms, which the neuro thought suggestive of migraine. I am 61, which is relatively late to start getting migraines.

Re B6 deficiency, that wouldn't show as two discrete spells of 2-3 hours each, would it?

I can only speak to my experience and my mother's (she has since passed away). (and for what it's worth - they told me that my six months of spells that I was having WITH NO HEADACHE the entire six months - was a migraine aura)


My spells started off being about 5 minutes long and I'd have one or two spells a day. Then they grew to around 15 minutes long and around six to ten a day. Then they started to last an hour or two .... then four to six hours a day.... then one morning it was just 'on' and didn't go away. So, it ended up being more of a 'build up' situation. Which falls in line with more and more chemicals being added. Admittedly, I WAS taking a single otc tablet of B6 through this time period so my toxicity level was probably still climbing at that point.

My mother's experience was more sporadic. She'd have a ten minute spell once a week or so... and hers never built up to worse than that.

Obviously, I'm a stranger online - so it's not like I'm trying to diagnose you... nor do I have all the facts on ANYTHING... just sharing my experience (and a little of my frustration). Once I stopped taking the B6 I didn't see an immediate improvement. It was a few months after I started methylation before I noticed a big improvement. I'm just frustrated that it took so long to diagnose me. Apparently, B6 toxicity is not common with normal doses - and they only know about it from folks who take handfuls of the stuff. I'm thinking it's related to MTHFR that my mother and I didn't tolerate small doses.

 

[Hip]

@PennyIA

You stopped vitamin B6, then started methylation, and then a few months later you had a big improvement (getting less headaches). You are attributing your improvement to stopping B6, but logically your improvement could just as likely have been due the fact that you started methylation.

Though a quick Google search does reveal that some people get migraines when taking B6, so your B6 theory is certainly plausible. See here for example: Vitamin B6 causing headaches?

 

[PennyIA]

But, the reality is that I never had any headaches. None. Not one. The blurred vision, dizzy spells and numbness and tingling on one side of my body was getting blamed on migraines... when I never had any head pain at all. I mean, I wasn't even having stress headaches or mild anything... no head pain at all.

When another nuerologist agreed that they weren't migraines, she thought they were TIAs that were progressively worsening.

When the symptoms stopped being intermittent and long-term - they thought I'd had a super mild stroke (too small to find on an MRI).

When the symptoms became worse, but six more MRIs continued to show no evidence of stroke... they threw out both theories.

I started pushing the theory of B6 toxicity to my doctors, but it took two years to convince them to test my b6 levels. I did test toxic on B6. The doctors didn't want to discuss b6 toxicity symptoms with me because at the time they were trying to get me into CBT and GET and 'downplay' health issues being the problem. So, they swept it under the rug.

Stopping B6 didn't help enough... though at least they stopped telling me to take more b6 (high homocysteine levels). Stopping B6 is the first thing that stopped those two symptoms from getting worse. My theory that remains is that starting methylation allowed my body to start to eliminate the b6 toxic load. Because within two months of starting it, the numbness and tingling that had been a constant companion for four years finally has gone away. There are still episodes of dizziness - but it's very much tied to position - right now, right after I lay down... have had episodes in the past of dizziness on standing (tied to low blood pressure). Blurred vision is gone as well - admittedly I'm still wearing glasses - but I was wearing glasses before when my vision would suddenly go very blurry.

 

[MeSci]

I can only speak to my experience and my mother's (she has since passed away). (and for what it's worth - they told me that my six months of spells that I was having WITH NO HEADACHE the entire six months - was a migraine aura)


My spells started off being about 5 minutes long and I'd have one or two spells a day. Then they grew to around 15 minutes long and around six to ten a day. Then they started to last an hour or two .... then four to six hours a day.... then one morning it was just 'on' and didn't go away. So, it ended up being more of a 'build up' situation. Which falls in line with more and more chemicals being added. Admittedly, I WAS taking a single otc tablet of B6 through this time period so my toxicity level was probably still climbing at that point.

My mother's experience was more sporadic. She'd have a ten minute spell once a week or so... and hers never built up to worse than that.

Obviously, I'm a stranger online - so it's not like I'm trying to diagnose you... nor do I have all the facts on ANYTHING... just sharing my experience (and a little of my frustration). Once I stopped taking the B6 I didn't see an immediate improvement. It was a few months after I started methylation before I noticed a big improvement. I'm just frustrated that it took so long to diagnose me. Apparently, B6 toxicity is not common with normal doses - and they only know about it from folks who take handfuls of the stuff. I'm thinking it's related to MTHFR that my mother and I didn't tolerate small doses.

Don't worry - I treat all diagnoses - 'definite' and tentative, self-diagnoses, diagnoses by doctors and diagnoses or suggestions from others - with a great deal of caution!

I'm sorry to hear about your mother - don't know whether it was recent or not.

My symptom pattern doesn't seem like yours. I had two discrete episodes of what appeared to be scintillating scotoma, which the neuro this week reckoned were migraine. There were no symptoms at all other than the visual distortion, which lasted 15 and 30 minutes respectively and were several months apart, possibly years.

Then two bouts of headache, temporary dyslexia, nausea, vertigo, dizziness, photophobia and loss of appetite last week, one the day after the previous one, lasting about 2-3 hours each, although some of the symptoms lasted longer. I felt rather unwell for a couple of days before that as well.

I have observed a possible B6 sensitivity in the past, when I developed numbness of the hands after taking a supplement called Tyroplex, which contained tyrosine, B6 and other things too, I think.

I am careful not to take much B6 since then, and stick to between 10 and 12.5 mg a day. I'd rather take less, but my preferred multivit contains 12.5 mg and I am currently stuck with a melatonin brand that contains B6 (after spending ages trying to find one that didn't - the listing didn't mention the B6!). But I have been suffering with numb hands again for the best part of a year. It disappeared temporarily with a turmeric supplement, then came back again.

 

[golden]

Silent migraines.

Silent migraines was plucked out of thin air and thrown at me too for having similar neurological symptoms.

Its a Doctors favourite for women.

 

[Sidereal]

Even minuscule doses of supplemental B6 make me worse. I don't understand how this is possible but doses as low as 5mg cause a noticeable increase in peripheral neuropathy and brain fog.

 

[PennyIA]

Even minuscule doses of supplemental B6 make me worse. I don't understand how this is possible but doses as low as 5mg cause a noticeable increase in peripheral neuropathy and brain fog.

I agree that I had symptoms with far low doses. P-5-P has been my better option, it seems to provide the benefits intended by B6, without the peripheral neruopathy.

 

[xchocoholic]

It's occurred to me that the title of this thread should be directed at doctors as much as at us!

I think I get what you meant by this.

But to be sure, did you mean that doctors should think about when it's ok for THEM to ignore a patients "life threatening" symptoms ?

What mental process do they go through to determine which patients symptoms to take seriously ? What exactly is this process ?

Maybe they just need to convey to patients that while their symptoms can be life threatening, more often than not they aren't.

And the only reason they use scare tactics is to get patients in to the er or to see their doctors is so they can verify that these symptoms aren't going to kill us. This time. And partly for cya too.

Maybe they're leaving out the part where they tell us that based on their experience, these "life threatening" symptoms are normal for some people. Or maybe just normal for the chronically ill ? Is this why they call chronically ill patients pre-morbid ?

And while these "life threatening" symptoms didn't kill us yet, they will someday ? Because these are our weak spots.

Maybe they should add that people having chronic "life threatening" symptoms need to learn when to ignore them or self treat and when not too. I know diabetics and those with anaphylaxis do this.

I've never worked in healthcare so I wouldn't know how common these symptoms are. But they do.

It occurred to me that they appear to use sarcasm a lot when speaking with patients. So maybe that's the problem. They don't know how to talk to patients about this ? ?

I was told horror stories about diabetes, cancer, etc etc etc and that I "should be grateful" I don't have those. But maybe what they'd like to say directly but don't is "You didn't die. Stop being a drama queen". Based on their demeanor at the time, I just thought they were wigging out. Lol.

Tc ... x

 

[MeSci]

I think I get what you meant by this.

But to be sure, did you mean that doctors should think about when it's ok for THEM to ignore a patients "life threatening" symptoms ?

What mental process do they go through to determine which patients symptoms to take seriously ? What exactly is this process ?

Maybe they just need to convey to patients that while their symptoms can be life threatening, more often than not they aren't.

And the only reason they use scare tactics is to get patients in to the er or to see their doctors is so they can verify that these symptoms aren't going to kill us. This time. And partly for cya too.

Maybe they're leaving out the part where they tell us that based on their experience, these "life threatening" symptoms are normal for some people. Or maybe just normal for the chronically ill ? Is this why they call chronically ill patients pre-morbid ?

And while these "life threatening" symptoms didn't kill us yet, they will someday ? Because these are our weak spots.

Maybe they should add that people having chronic "life threatening" symptoms need to learn when to ignore them or self treat and when not too. I know diabetics and those with anaphylaxis do this.

I've never worked in healthcare so I wouldn't know how common these symptoms are. But they do.

It occurred to me that they appear to use sarcasm a lot when speaking with patients. So maybe that's the problem. They don't know how to talk to patients about this ? ?

I was told horror stories about diabetes, cancer, etc etc etc and that I "should be grateful" I don't have those. But maybe what they'd like to say directly but don't is "You didn't die. Stop being a drama queen". Based on their demeanor at the time, I just thought they were wigging out. Lol.

Tc ... x

Some interesting thoughts and observations.

But my own thinking was that it was a rhetorical question for doctors, to which the obvious answer should be "NEVER!"

From what you say, I get the impression that advice is quite different in the US from in the UK, and I guess the reason is that your healthcare system is much more profit-led than ours, and also people are more liable to sue if harm is thought to have been done.

Here there is perhaps more risk of doctors trivialising our symptoms and regarding us as hypochondriacs or nuisances.

I am thinking especially of my horrible experience with hyponatraemia. Instead of trivialising my symptoms when I phoned, and not even saying whether he was coming to visit or not (he didn't), he should have got someone out to me asap or told me to phone an ambulance, as my symptoms included breathing difficulty, which should always ring alarm bells, even though I had had moderate asthma in the past (but no longer). He just assumed that it was psychological, and conveyed this to the ambulance crew when I called them, and they just took his word for it even though he had not seen me.

If I had died, the cause might never have been found out. Can hyponatraemia be determined after death? Would they even have looked for it, as I had no previous history?

 

[xchocoholic]

Your experience with hyponatraemia sounds like a nightmare. We're able to get your medical team at the time to understand what happened ? Are you likely to do this again ? Can you change doctors ?

There are definitely some big differences between uk and us medical care. I can't imagine having my doctor show up at my door. Or making a dx of any kind without seeing me.

Based on my experience, they're big on looking for clues from how the patient looks here. Here they want to see you and then decide you're a hypochondriac. Lol.

The people in the ambulance are trained to evaluate what they see too. From what I've seen that's just the beginning of the patient assessment tho and only used as in conjunction with what the doctor sees.

I'm not up on hyponatraemia but I hope it doesn't happen to you again. I agree that anything that affects our breathing should be evaluated.

Tc .. x

 

[MeSci]

I won't

Your experience with hyponatraemia sounds like a nightmare. We're able to get your medical team at the time to understand what happened ? Are you likely to do this again ? Can you change doctors ?

There are definitely some big differences between uk and us medical care. I can't imagine having my doctor show up at my door. Or making a dx of any kind without seeing me.

Based on my experience, they're big on looking for clues from how the patient looks here. Here they want to see you and then decide you're a hypochondriac. Lol.

The people in the ambulance are trained to evaluate what they see too. From what I've seen that's just the beginning of the patient assessment tho and only used as in conjunction with what the doctor sees.

I'm not up on hyponatraemia but I hope it doesn't happen to you again. I agree that anything that affects our breathing should be evaluated.

Tc .. x

I won't repeat the details here but gave a summary in this post, and this post, and elsewhere on PR.

I did change doctors - several times. I ended up having to change to another practice that is outside my small home town and requires a bus journey to get there. It's by no means perfect, but is better.

I won't get it again as long as I am in control of what I eat, drink and take. One of the many reasons I want to stay out of hospital!