Last visit at neurologist created more questions than answers

[in2k]

Hi

I asked a few questions back in November 2014 and thought I'd not return again. The twitching I was then complaining about has become worse, and I keep feeling internal vibrations/tremors, fatigue and at times very active fascics. Because of this, I contacted another neuro because I wanted help to try figuring out what this could be, and he threw out a few claims that contradicts pretty much everything I thought I knew of neruological disorders.

One of his claims were that it was possible to recognise whether or not fasciculations was ALS or not. I thought since there are many reasons for why those may occur, that it was impossible to judge by eye alone.

His other claim was that, based on what I was telling him about symptoms I experienced, the only potential illness was infact ALS. There were no other causes, so he basically said that either I've got ALS, or nothing at all.

Did I miss anything important here, or did the neuro throw out claims that cannot be backed up? A short summary of my symptoms that I described to him:

Started in my right upper arm, then went on to continue on left upper arm later. Then in my right thigh, and later on the left thigh. I'm feeling vibrations in both my legs and my left arm, but I cannot actually see them (apart from the fascics, they are very visible when they first start off). Then I also explained to him that I were having a tingling sensation in left side of my face. The fascics later on spread to the eyes, first the left one, then the right one followed by some cramping sensation. Now it's gone from both, though. For a period I also had them in my forehead, noticed by my girlfriend. Sometimes the fascics feels as they're electric shocks, and there's all this intermittent buzzing from my legs. Makes me think of these neon lights you see in movies depicting shady motels that keeps buzzing randomly.

I honestly don't know what to think anymore. I was thinking along the lines of neuropathy, then this neuro comes saying that this is either fully benign or ALS, as if there were nothing in between. He did test some reflexes (upper arms, knees and plantar). Upper arm were almost non-existant (but symmetrical), knees were rather jerky but still symmetrical. No plantar reflexes. So all in all, this should be good news.

The particularly odd thing is that I at no point at all mentioned any fear of ALS, I just experience that something is going on with my nerves that I don't understand and that scares me, but he still kept going on about ALS. Did I just see the wrong neuro? (Not that there are many available where I live...) I'd also be happy to hear from anyone with the same symptoms that does not have ALS.

Also, I am scheduled for an EMG/NCV but that's some time ahead still. Hoping that could potentially shed some light on what is going on...

Thanks again for taking your time to read.

 

[hunterross258]

Doesn't sound like a very good neuro if you ask me, especially if he said that without an EMG. I have fasciculations, atrophy but no weakness and I have been diagnosed with Parsonage Turner Syndrome, which is even more rare than ALS. I would suggest a neuromuscular doctor if the EMG doesn't come back clean...or perhaps get the EMG done by a neuromuscular doc as you will probably feel more at ease afterwards.

Please keep in mind that twitching without clinical weakness and atrophy isn't really diagnostic of anything. One of the members on here, Atsugi, I believe has had twitching for over 30 years.

 

[ECpara]

I don't think this neuro is particularly knowledgable in the field ALS. So much of what you mention is not typical of ALS onset ( vibrations, tingling, buzzing, electric shocks and tremors). And your fasciculations are body-wide, not typical in ALS onset. Very few people are diagnosed with ALS due to twitching, contrary to what Google (or this neuro) may say. Wait until your scheduled EMG, I have a feeling you will be cleared of ALS when those results come back. Sorry you can't find a more reliable neuro. Good luck!

 

[Atsugi]

Well, I suppose some doctor has got to graduate last in the class. Or else, he's seeing something you haven't told us about.

Tom, the important thing is a paralyzed muscle--a muscle that is limp, useless, and won't contract at all. That's what ALS is all about--paralysis.

ALS starts in the hand, foot, or tongue. Rarely in the trunk. If you're still walking, talking, and lifting up pencils, then I doubt you have any paralysis.

 

[in2k]

Hi and thanks for your responses

The neuro said all these things even before he started a somewhat superficial examination of me. He also said that during his 15 years he's had 4 cases of ALS and a lot of people fearing it. Again, he brought ALS up, I was there because something is going on with me and I am eager to find out what. So while I would like to believe the neuro knows his stuff, his statements did put me in some doubt. Also, I must admit that he made me kinda worry. I also though I mentioned in the first post, but apparently forgot, that the neuro did not think I had ALS (or any other neurological disease, because as he put it, what I described could only be attributed to ALS and nothing else).

The past weeks, I've been feeling heaviness in one arm and both my legs, which may just be fatigue or have a deeper cause. This in addition to the aggressive twitching is why I made that appointment in the first place, because I want to find out what is really going on with me. The reason I'm slightly freaking out now is also because I'm feeling soreness/pain in the areas where the twitches has been most aggressive, which again makes me think about the consultation and fearing that the pain may infact be due to muscle loss and a result of the muscles being stressed more than they can handle (Not doing anything physical out of the ordinary.. just "standard living").

Even though the neuro-appointment I had did indeed stirred up my initial fear of ALS a bit, the rational bit of me is trying all it can to find other explanations. But then again, the doctors are who's supposed to help guiding us through these things should know better than whatever info I can find elsewhere.. so I'm really torn here on what to believe. The impression the neuro gave me was that ALS may very well come gradually, and not paralyze an entire group of muscles at once. Really confused about it all now... *shrug*

I would like to stress that I do not aim to have you "confirm" me having anything at all, it's just that this forum seems to be an extremly valued resource of people with all sorts of good knowledge on neurological phenomenas, which could maybe help me with a few pieces of the puzzle. I'm at least glad to hear that my impression of the neurologist I saw being somewhat questionable is shared by others here, meaning I'm not losing my mind as much as I thought I were

Thanks again for reading.

 

[hunterross258]

The past weeks, I've been feeling heaviness in one arm and both my legs, which may just be fatigue or have a deeper cause. This in addition to the aggressive twitching is why I made that appointment in the first place, because I want to find out what is really going on with me. The reason I'm slightly freaking out now is also because I'm feeling soreness/pain in the areas where the twitches has been most aggressive, which again makes me think about the consultation and fearing that the pain may infact be due to muscle loss and a result of the muscles being stressed more than they can handle (Not doing anything physical out of the ordinary.. just "standard living").

This paragraph should somewhat put you at ease as ALS doesn't present with soreness and pain. Also, it doesn't create symptoms at onset in arms and legs. Starts in one muscle group.

 

[in2k]

Slow response from me on the last comment, and yes... I try to convince myself about that as hard as I can, but what the neuro said to me really had me worried and the twitching and buzzing has really become noticeable now.

I'm scheduled for an EMG/NCS the coming wednesday, so hoping to get some answers to whatever goes on and I have a few questions regarding that in order to get the most out of it.. first of all, does it hurt a lot? I'm a bit of a wuss when it comes to pain involving sharp things or needles. Also, what can I expect during the examination itself? Will they tell me anything at all, or will they just tell me to wait for the evaluation? Obviously I will not be returning to the neuro who referred me, because I still think it's very unprofessional saying something like "this is ALS or nothing", so if I ask the clinic that performs my EMG to send a copy to my GP, will he get both the raw data and the evaluation, or will they typically just send their evaluation? Is there anything else that would be useful for me to know in advance?

I'll admit, I'm scared to death on this one.. not necessarily about ALS, but that something is indeed wrong. In my head it's still not much acceptance that all these weird things can go on without being a sign of something serious... but in a few days I may finally know. Part of me doesn't want to know, part of me does... *shrug*

Again, thanks for reading. Will make another small donation on my next paycheck as my way of thanking you for what have been very valuable input for me so far. It's not much, but I hope it will contribute in helping someone who needs it.

 

[in2k]

Here comes an update in case some other people with similar symptoms to mine want to know how it went...

TL;DR

Have major issues with widespread twitching and buzzing. Neurologist said it had to be ALS or nothing based on how I represented my symptoms. Symmetrical reflexes, no plantar reflex (last tested after EMG/NCS was done).

So to the results:

EMG was clean, NCS showed possible loss of nerve response in my feet. After talking a little about this discovery some further examination was done. It turned out to also be some loss of senses in the same area, so something is going on but it is not ALS. Due to the fact that the neuro who sent me there brought it up, the doctor doing the tests chose to state specifically that this was not it. I do not have any report yet, so I do not know how much the deviations were on the NCS. The doctor who performed the tests said it was hard to say whether or not this was normal for me or not, because he had no previous measurements to compare to but he would look into if the results from the NCS could be considered within lower normal range.

A special thank you to the people keeping this forum alive, and not least the ones who was kind enough to give me feedback along the way. I wish there was anything I could do to repay you, because I can't even start to imagine how much some of you give of yourselves. I've said it before, and I'll repeat myself, this is an extremely good resource with a lot of valuable information for both scared people such as myself and to the ones who actually suffer from MND. Guard it well. I wish you all the best every single one of you.

-Tom