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Author Topic: seeing a neurologist and trying to get an ALS Test  (Read 2058 times)

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Offline Niceguy237

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #10 on: May 31, 2014, 08:43:55 AM »
I can relate to a lot of this discussion.  Struggling with many of same fears.  Saw neuro 2 months back, he did full exam, saw no red flags, basically told me no worries and to see him in 6 months.  Went back a month later due to excessive fatigue - he did same exam, saw nothing, but scheduled emg for September.  Tough wait for me, I have lots of twitches (especially after working out) and shoulder stiffness that seems abnormal.  I also seem more fatigued after a workout.  Nervous but trying to push through best I can. 
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Offline NytViolet

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #11 on: May 31, 2014, 12:46:15 PM »
I began twitching 17 years ago, and went through the *** fear.  I walked around the house on my tiptoes, and did other ridiculous exercises almost non-stop to reassure myself.  I spent a YEAR of self-imposed hell waiting for the day I'd wake up and find some horrible symptom.  I believe I told Mexican that I saw two neurologists for a total of 3-4 visits... they found absolutely nothing except SLIGHT hyperreflexia (which is normal if you are fairly muscular, which I was at the time from running and playing tennis).  This is how sick the mind can be:  Now, after 16 years not even thinking about ALS, I've started to develop the fear again just from reading the forums!  How sick is that???  I challenged myself to google *** and read about it again (just like I did so many years ago) and found myself in the midst of a full-on panic attack the other day.  I have fibromyalgia, so twitching is VERY common for me, as is PERCEIVED weakness, fatigue, and general clumsiness at times.  Suddenly, a casual misstep while wearing flip-flops is a major concern and I find myself overanalyzing everything just as I did so many years ago.  I was at my brother's house watching a movie and sitting cross-legged on the sofa; when I went to stand up, my legs felt heavy, odd and tingly (of course they did! I'd spent almost 2 hours sitting cross-legged).  Our rational minds tell us we're overreacting, but it's a touch fear to beat.  I guarantee if they found a cure for this tomorrow, 100% of the *** worriers would move on to another disease to obsess over.
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God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Offline madmexican808

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #12 on: May 31, 2014, 12:48:31 PM »
I began twitching 17 years ago, and went through the *** fear.  I walked around the house on my tiptoes, and did other ridiculous exercises almost non-stop to reassure myself.  I spent a YEAR of self-imposed hell waiting for the day I'd wake up and find some horrible symptom.  I believe I told Mexican that I saw two neurologists for a total of 3-4 visits... they found absolutely nothing except SLIGHT hyperreflexia (which is normal if you are fairly muscular, which I was at the time from running and playing tennis).  This is how sick the mind can be:  Now, after 16 years not even thinking about ALS, I've started to develop the fear again just from reading the forums!  How sick is that???  I challenged myself to google *** and read about it again (just like I did so many years ago) and found myself in the midst of a full-on panic attack the other day.  I have fibromyalgia, so twitching is VERY common for me, as is PERCEIVED weakness, fatigue, and general clumsiness at times.  Suddenly, a casual misstep while wearing flip-flops is a major concern and I find myself overanalyzing everything just as I did so many years ago.  I was at my brother's house watching a movie and sitting cross-legged on the sofa; when I went to stand up, my legs felt heavy, odd and tingly (of course they did! I'd spent almost 2 hours sitting cross-legged).  Our rational minds tell us we're overreacting, but it's a touch fear to beat.  I guarantee if they found a cure for this tomorrow, 100% of the *** worriers would move on to another disease to obsess over.

yeah you did message me, and it got the best of me, after a week of feeling fine it came back. week is good compared to like a day of happyness.
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Offline madmexican808

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #13 on: May 31, 2014, 12:52:00 PM »
You'll read a study, too. The infamous 6% study. I've already looked into this deeply and what I have said is based on that study as well as the Mayo study. People who have read the study tend to have a poor understanding of the material and you will find fear-mongering. Those 6% DID have UMN symptoms (asymmetric reflexes or something along those lines). They did not present solely with twitching.

Right, well. Not sure who I was trying to help. You or myself. Hopefully this is adequately thorough.

I am tried so hard to avoid neurologist because assuming its expensive? and I feel I would waste my time and the doctors. But what you said helps alot. What caused you to freak over a**?
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Offline thenomnomnomicon

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #14 on: May 31, 2014, 03:38:33 PM »
Neuros are not too expensive. The EMG is unless you have insurance.

I began twitching body-wide really abruptly and experienced 'pseudocramping' (feels like really tiny pains/fleeting 'cramp-like' feeling or you're about to cramp, but never quite). My twitching has reduced drastically; not sure how to feel about that honestly. The week prior I'd been hyperventilating/feeling unable to catch my breath. I'm hoping it was brought on by that.
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Offline NeverAgain2

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #15 on: May 31, 2014, 06:14:05 PM »
I'm going to suggest, as did another poster, that a trip to a neurologist will provide about a day's worth of assurance that you do not have ALS or anything else but exhausted nerves.  But...because you have become sensitized and frightened by your symptoms, you will continue to look for physical causes, even if cleared by Dr. Mayo himself from the grave. 

Anxiety is a separate illness and it must be dealt with before you can get a hold over your feelings.  Feelings are not facts, but only your take on things, which, another poster said which is entirely true, you are not qualified to diagnose. 

Please consider the possibility that anxiety/depression and chronic stress may be the culprit.  Read the list of symptoms; I think you will find twitching galore, more sore muscles than Arnold, and mental confusion.  The good news is that anxiety can be helped and treated, but the longer you go on in a frightened and out of control fashion, the harder it is to reign in.

Just my opinion.  I ain't a doktor.  I can't even spell doctor.
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Offline madmexican808

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #16 on: May 31, 2014, 06:37:18 PM »
Neuros are not too expensive. The EMG is unless you have insurance.

I began twitching body-wide really abruptly and experienced 'pseudocramping' (feels like really tiny pains/fleeting 'cramp-like' feeling or you're about to cramp, but never quite). My twitching has reduced drastically; not sure how to feel about that honestly. The week prior I'd been hyperventilating/feeling unable to catch my breath. I'm hoping it was brought on by that.


mine came after an intense workout and I just thought dehydration then it came during times of no activity. causing me to have huge heart pulses and next thing I know I noticed a cramp on left forearm and thought it was ALS then my old ankle injury was acting up and I thought its been on my leg ever since.
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Offline GoodTimesahead

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #17 on: June 01, 2014, 03:45:51 AM »
Alright man, I know it's tremendously unlikely you get over this fear after visiting a neurologist; I did and it's done little to relieve my fear. I've scheduled another appointment soon for a second opinion.

7 months. 7 months according to top MND without weakness and a clean EMG and you're 'officially' cleared. I've read copiously on this disease and if all you are is twitching, you're 99.999% likely to be fine. Unfortunately, personally, my twitching has presented with a few other things that slightly works against my odds (not by much, I'm probably fine too).

It's going to be a long, long 7 months. But there's your definitive end. I am so sorry you're going through this man. A clean EMG will help to reduce your fears, but it will not end them. Me, I'm only a month and a half into this. If you do see a neurologist and you have no UMN symptoms/clean EMG/no weakness/no atrophy, I can tell you it's ridiculously, ridiculously unlikely. Ridiculously.

Great. I had a clean clinical and EMG at a little over two months into the twitching and thought I was in the clear (although don't really feel that way sometimes). It's been four months now and still twitching like crazy, but no major increasing strength loss and zero atrophy. Do you think I should get another EMG at around 7 months?
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Offline thenomnomnomicon

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #18 on: June 01, 2014, 04:46:01 AM »
Realistically, if you have no noticeable deficit at 7 months, or even 2, or 4, you're very much more than likely fine. However, if it were me (and do keep in mind who you're talking to as I'm not professionally trained and in the midst of this panic too), I would see a neuro at the 7 month mark. Not necessarily to have an EMG, but a clinical exam and an all-clear.

Again, I'm certain you're fine. I've related everything I know as precisely as I can. If you have no UMN symptoms now you would be the one in a billion, figuratively speaking. I don't imagine rarity means much to you, though. You're already anxious over a stupendously rare, in any one below the age of 40, disease.

Do work on your anxiety. I'll wager you notice a reduction in twitching. It's hard; so very hard, I know. Remember I'm ONLY speaking in worst/rarest/exceptional-cases and I'd advise you listen to your neurologist before a guy on the internet. 

I'm definitely not trying to scare you or anyone else. Only sparing you the initial horrors, then later relief, of what you'll inevitably research. Make sure you read-over everything I've written. Not a single case in either study presented without UMN and/or EMG abnormality (positive sharp wave/denervation). And even then, even IF your EMG were abnormal, there are quite a few other things that can cause abnormalities. Cubital Syndrome, Carpel Tunnel, impingement of any variety, to name a few; most neurologists can tell the difference between these and the really nasty s**t.
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Offline jilllayy

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #19 on: June 01, 2014, 07:39:05 AM »
I could have written all this myself! I have been on forums, self testing and have seen a neurologist with 2 clean emgs. Ill be 4 months into this from my first symptom but after one is fine another starts up. I use to be full blown panic but im calmy waiting for my neuromuscular specialist appt june 16th.

Ha is a vicious cycle because now that my hands shake a little my brain shoots me from als to parkinsons. Mind you im 25 female! Even more rare to occur then men haha ohhh the joys of anxiety!
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