Back from neuro, 10% scared, 30% unhappy.

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Back from neuro, 10% scared, 30% unhappy.

Postby RGB on May 11th, 2013, 11:56 am

A bit of background... Sudden onset body-wide twitches in Jan '13 ( concentrated bilaterally in calves and feet AT THE MOMENT, previously I have had daily forehead twitching but that totally disappeared months ago, infrequent shoulder/back twitches throughout) . I have a history of anxiety, no other health problems and no weakness apparent to me.

Today I finally got to see a consultant neurologist. His concluding statement was that he believes there is a 10% chance that I have ALS (so that's 5,000 times greater than the average person on the street) and he wishes to do the full set of tests. Bloods can be done next week (the lab is closed on a Saturday so it means another trip to the hospital) but the waiting lists for the NCV and EMG are "long at the moment".

He had the bedside manner of a brick so I had to push for any answers but specifically...

Does the body-wide distribution of the fasciculations indicate a lower probability of this being ALS? No.
Do my frequent eye-lid twitches indicate a lower probability of it being ALS (and higher chance this is due to anxiety or a benign cause)? No.

All that I had planned to ask went out of the window once I was actually there but I assume he found no weakness or abnormal, other than brisk, reflexes as he only carried out each part of the test once (common sense suggests if you get something anomalous you would repeat it?).

So a 10% chance of a first class letter not arriving the next day seems like a very low number. A 10% chance of ALS seems like a very big one and has really shaken me up. Especially with a long wait for an EMG.

Thoughts (reassuring or otherwise) are welcome.

RGB
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: Back from neuro, 10% scared, 30% unhappy.

Postby chrissi on May 11th, 2013, 12:45 pm

A sudden onset of widespread twitching with lack of weakness is not indicative of MND. I don't know where that guy dug that 10% number out. Besides that fact, ALS twitches like your forehead do not suddenly disappear. A nerve does not stop dying .
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Re: Back from neuro, 10% scared, 30% unhappy.

Postby RGB on May 11th, 2013, 1:01 pm

chrissi wrote:A sudden onset of widespread twitching with lack of weakness is not indicative of MND. I don't know where that guy dug that 10% number out. Besides that fact, ALS twitches like your forehead do not suddenly disappear. A nerve does not stop dying .


Thanks for the response Chrissi.

I've done plenty of research on this topic (in the plausible corners of the www i.e. scientific papers, neurologists, neurology textbooks etc) and had convinced myself that it was very unlikely indeed that this was ALS, a lot more unlikely than 10%. My conclusions agreed very much with what you said above. However, then I see the expert and the science seems to have changed.

I am hoping that "10%" is his (lazy, inaccurate!!) short-hand for "very unlikely but possible" rather than 1 in 10 people who present like this go on to be diagnosed with ALS (if you see the distinction?).

Thanks again for taking the time to reply. I'm not looking forward to the long wait for the EMG :(

RGB
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: Back from neuro, 10% scared, 30% unhappy.

Postby chrissi on May 11th, 2013, 3:13 pm

See, this happens quite a lot when people visit normal neurologists. Those are persons that are treating people with headaches, entrapment syndromes, parkinsons, brain tumors, epilepsia and , well, just ALL neurological conditions. So it is not astonihing that they do not know too much about fasciculations, it is only a very small part of their field of interest. As soon as people see neuromuscular specialists, they are more or less kicked out of the practice because those docs can tell right from the start that it is not ALS from their experience. 10% is a hilarious number. The most common citation of neuros on here is: I have never seen a case of ALS that first presented wirh widespread twitching. And never is a bit of a difference to 10%.
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Re: Back from neuro, 10% scared, 30% unhappy.

Postby SecretAgentMan on May 11th, 2013, 4:46 pm

Since you are only 10% scared and 30% unhappy, take the other 60% and focus on letting go of that fear, stress, and worry. Our modern medicine might as well be in the stone ages as far as I'm concerned. For all our technology and advances our doctors still just guess and throw pills at us. They don't cure anything, they just cover it up. Consider going alternative medicine my friend.
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Re: Back from neuro, 10% scared, 30% unhappy.

Postby RGB on May 11th, 2013, 5:14 pm

chrissi wrote: And never is a bit of a difference to 10%.


Thanks again Chrissi for such a reassuring, but also reasoned, reply. I'll try to focus on the 'never' end of that range :)
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: Back from neuro, 10% scared, 30% unhappy.

Postby RGB on May 11th, 2013, 5:18 pm

SecretAgentMan wrote:Since you are only 10% scared and 30% unhappy, take the other 60% and focus on letting go of that fear, stress, and worry. Our modern medicine might as well be in the stone ages as far as I'm concerned. For all our technology and advances our doctors still just guess and throw pills at us. They don't cure anything, they just cover it up. Consider going alternative medicine my friend.


Thanks for the reply 'S.A.M.'.

My trouble is being rational. I had rationalised the fact that the chances of it being anything bad were v.v.v.slim (thankfully I am able to do this, unlike those health anxiety sufferers) but now I am having to de-rationalise the quantitative opinion of an 'expert'. I'm yet to decide on the significance of those inverted commas but I am fairly sure I know where your opinions lie :)

Thanks again.

RGB
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: Back from neuro, 10% scared, 30% unhappy.

Postby Tb12 on May 12th, 2013, 6:27 am

Hi RGB,
I can understand your worry, i have every symptom i read on this board in just a short time of 5 months. Maybe my story will ease your mind or make you want to sort out better medical advice..so far i have been seen by 3 different neurologist, a team of neurologist whilst in hosptial for my symptoms and i have had every blood test most dr's will order, a mri of spine which showed abnormalities, a mri of the brain which showed abnormalities, and a emg which showed chronic denervation in all my muslces tested, yet my neurologists rule out ALS even with my emg findings because of my clinical exam being fine each time they check me. Twithcing is definitely not something they will diagnose ALS off from my experience, you have to have some clear weakness and a very conclusive als type dirty emg reading before they will go near a diagnoses. So keep your spirits high and be happy that it was twitches you woke up with and not weakness or paralized limbs or severe bulbar issues because that to my experience would warrant more concern than twitching as far as ALS is concerned, i hope this helps and i hope you seek better medical advice...putting percentages on diagnosises without exams and emg's etc sounds like he is playing dr and not being one. Anyone else feel the same?
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Re: Back from neuro, 10% scared, 30% unhappy.

Postby RGB on May 12th, 2013, 2:14 pm

Tb12 wrote:i hope this helps and i hope you seek better medical advice...putting percentages on diagnosises without exams and emg's etc sounds like he is playing dr and not being one.


Thanks for this Tb12, seems like there are some very nice people on this board :)

Having had a day to reflect I am starting more and more to doubt just how knowledgeable this particular consultant is on the topic. For instance, it seems to me (from the scientific literature) that the very few cases that present with 'fasciculations before weakness' have a very high incidence of cramps with their twitches. He didn't even ask me about this (I don't). Might be a silly example, and might be a misplaced case of thinking I know more than I really do, but thoughts like this (and responses like yours) make me think just how much thought went into the 10% figure.

Some people with apparently identical symptoms to me never even get as far as a consultant as their GP turns them away with 'anxiety' or perhaps they don't even seek medical attention at all as they don't attach any significance to a few twitches. Perhaps they are the lucky ones!

One thing I did want to add was it wasn't my intention to unnerve (no pun intended!) any of the health-anxious people here. The advice I received is that of one person and should be treated with the appropriate caution.

RGB
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: Back from neuro, 10% scared, 30% unhappy.

Postby colls22 on May 12th, 2013, 11:04 pm

Ok, first of all, sounds like you unfortunately got stuck with a rotten neurologist. I'm no expert, but widespread twitching is NOT less indicative of ALS?! Surely he jests. That is wrong. Full stop. Incorrect information.

I have been lucky with the general neurologists I've seen, as they do seem to have perhaps more experience with the disease than many. That being said, I, like another poster, recently went to see a neuro muscular disease specialist, as previous reassurances just weren't working. What the other poster said was right - they are so experienced and specialized, they can often spot a case as soon as you walk in the door, shake their hand, and speak to them.

I feel for you because I think a totally, totally unnecessary amount of fear has been put in your head by someone who sounds to have barely even considered your situation. And now being faced with a wait for an EMG? That sucks.

I don't know upon what this guy was basing his 10% estimate, but with widespread twitching and no other symptoms, I believe he meant to have said -10%!

Please try not to worry until your EMG. I'm certain you're fine.
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Re: Back from neuro, 10% scared, 30% unhappy.

Postby RGB on May 13th, 2013, 12:59 am

colls22 wrote:Ok, first of all, sounds like you unfortunately got stuck with a rotten neurologist. I'm no expert, but widespread twitching is NOT less indicative of ALS?! Surely he jests. That is wrong. Full stop. Incorrect information.


Thanks for your reply colls22., it is very reassuring to get the responses that I have done. I think the biggest problem is that one part of my brain is saying he is the expert and that figure is accurate but the other part has difficulty making sense of it based on my own research. The stress of this has even started a twitch in a place I have never had one before the appointment, if it is ALS it is spreading quickly :) (<- possibly in bad taste to joke like that but it is v.early in the morning here and my good-taste-filter is still asleep!).

colls22 wrote:And now being faced with a wait for an EMG? That sucks.


And for an entirely unknown amount of time as a "long waiting list" could be days/weeks or months (or years?). I had been expecting him to say (after neuro exam and bloods) that it is almost certainly benign and if I was offered the EMG for *my* peace of mind I wasn't going to bother. The strange thing is (again, if my understanding is correct) is that if the waiting list is that long, as I have already been twitching for 4 months, then it is essentially redundant anyway.

Glad the reassurances you have now received seem to have helped allay your fears, thanks again for the reply.
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: Back from neuro, 10% scared, 30% unhappy.

Postby jerry2 on May 17th, 2013, 2:51 pm

RGB wrote:
SecretAgentMan wrote:Since you are only 10% scared and 30% unhappy, take the other 60% and focus on letting go of that fear, stress, and worry. Our modern medicine might as well be in the stone ages as far as I'm concerned. For all our technology and advances our doctors still just guess and throw pills at us. They don't cure anything, they just cover it up. Consider going alternative medicine my friend.


Thanks for the reply 'S.A.M.'.

My trouble is being rational. I had rationalised the fact that the chances of it being anything bad were v.v.v.slim (thankfully I am able to do this, unlike those health anxiety sufferers) but now I am having to de-rationalise the quantitative opinion of an 'expert'. I'm yet to decide on the significance of those inverted commas but I am fairly sure I know where your opinions lie :)

Thanks again.

RGB

Well, my neuromuscular doctor when I went the first and last time tole me he finds nothing wrong on clinical, but he is wrong 10% of the time so... doctors seems either to kick you out (the good variant) or they scare you for nothing (the bad outcome). And then there is that 0.0001% chance you have something. I had to pursuade myself that I am fine, even though he couldn't tell me. It took me 1 year and a half to get near there. Him saying I have atrophied hand didn't help me.
Last edited by jerry2 on May 17th, 2013, 2:56 pm, edited 3 times in total.
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Re: Back from neuro, 10% scared, 30% unhappy.

Postby jerry2 on May 17th, 2013, 2:53 pm

colls22 wrote:I have been lucky with the general neurologists I've seen, as they do seem to have perhaps more experience with the disease than many. That being said, I, like another poster, recently went to see a neuro muscular disease specialist, as previous reassurances just weren't working. What the other poster said was right - they are so experienced and specialized, they can often spot a case as soon as you walk in the door, shake their hand, and speak to them.


They can also be so "in ALS", seeing so many ALS patients they can not ever say you don't have it. Like a computer geek won't ever tell you your PC is safe and protected ;-)
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Re: Back from neuro, 10% scared, 30% unhappy.

Postby RGB on May 17th, 2013, 9:20 pm

jerry2 wrote:Well, my neuromuscular doctor when I went the first and last time tole me he finds nothing wrong on clinical, but he is wrong 10% of the time so... doctors seems either to kick you out (the good variant) or they scare you for nothing (the bad outcome). And then there is that 0.0001% chance you have something.


Thanks Jerry (I'm guessing ;) ), that makes a lot of sense.

I'm now trying to get some better feedback on the results of the neuro exam and bloods, should know more next week. Still scared of being in the 10% or 0.0001% though.
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: Back from neuro, 10% scared, 30% unhappy.

Postby wjjw on May 21st, 2013, 10:36 am

RGB wrote:My trouble is being rational. I had rationalised the fact that the chances of it being anything bad were v.v.v.slim (thankfully I am able to do this, unlike those health anxiety sufferers) but now I am having to de-rationalise the quantitative opinion of an 'expert'.

Your problem is the neurologist is being completely irrational. This is not the first idiotic statement I've heard from "experts" who, despite their medical degrees, seem to have a complete lack of common sense, no clue about probabilities, and a total disregard for causing needless anxiety in their patients. I sincerely advise you to laugh it off and forget it.

Cheers,
Bill
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Re: Back from neuro, 10% scared, 30% unhappy.

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