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Author Topic: seeing a neurologist and trying to get an ALS Test  (Read 1222 times)

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Online 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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Ph'nglui mglw'nafh Cthulhu R'lyeh

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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Offline madmexican808

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #20 on: June 02, 2014, 11:34:44 PM »
it sucks bad, I can't even exercise and I think soreness and weakness with it is due to A**
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Offline thenomnomnomicon

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #21 on: June 03, 2014, 12:05:11 AM »
Same boat, man. Still fear setting off twitches. Soreness and and the 'weakness' you're talking about though are unrelated to the actual disease. Try to remind yourself of this and don't let it interfere with your life.
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Offline madmexican808

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #22 on: June 03, 2014, 04:24:35 PM »
yeah its horrible, cramped today during mma training and have some radiating soreness and i think of it. which i am pretty sure pain does not come with it right?
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Online ShawnW

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #23 on: June 03, 2014, 09:10:59 PM »
Twitches and cramps without weakness mean little.  And *** is a motor neuron disease not a sensory neuron disease...so pain leads you away from that diagnosis.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline madmexican808

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #24 on: June 04, 2014, 02:04:07 AM »
so...basically pain has nothing to do with nor does range of motion or stiffness in the ankle joint? it comes and goes the stiffness and pain comes and goes too.sometimes pain in upper shin muscle too. Had calf cramp today and then be sore from time to time putting weight randomly during training.
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Offline livelaughlove

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #25 on: June 04, 2014, 06:00:41 AM »
You have BFS! ANd maybe BFCS. It's a mild neurological disorder and I have it too. Anxiety does not cause it. If you have anxiety that is a learned behavior which comes secondary to having to live with this disorder which is the mildest form of neuromyotonia. In my experience you will have it forever but it will get better. The initial flareup period lasts a couple months of fasciculations that will stay in certain parts of your body before moving to another part. Did you have infection with a viral illness or strep within a 6 month period before developing symptoms? That seems to trigger this reaction which is probably autoimmune related. It takes about a year before you probably will accept that you are just going to have to live with this forever but it does get better and it will never get worse, you won't ever be crippled or anything like that. It is called "Benign" because it does not progress into muscle atrophy or crippling the patient in any way. Stay off the internet... there is too much misinformation about MS and ALS and this has nothing to do with those diseases at all. You will not get weakness. What happens, in my opinion, is a person gets strep or some type virus that can cross the blood brain barrier in the brain. Then it causes an autoimmune reaction. The reaction it causes is during plasma ion exchange at the neuromuscular junction it makes the body attack that by firing it off all the time, a type of peripheral nerve hyperexcitability. It has a lot to do with sodium and potassium balance. So that's what happens. You have no control mentally over that, so you just need to accept it and move on.
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Online ShawnW

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #26 on: June 04, 2014, 08:36:31 AM »
so...basically pain has nothing to do with nor does range of motion or stiffness in the ankle joint? it comes and goes the stiffness and pain comes and goes too.sometimes pain in upper shin muscle too. Had calf cramp today and then be sore from time to time putting weight randomly during training.

That's what I said. 
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline madmexican808

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #27 on: June 04, 2014, 10:25:59 AM »
feels like weight just fell off my chest
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Online NeverAgain2

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #28 on: June 04, 2014, 09:56:58 PM »
It's frightening to have these symptoms, but if you can understand its origin in anxiety and chronic stress you will have the upper hand.  Comfort is a need and not a necessity, and while you are having this bout of anxiety, you will no doubt have uncomfortable moments.

Fear can be your jailor if you let it.

Don't!
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Offline livelaughlove

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #29 on: June 05, 2014, 05:21:20 AM »
the thing that makes me so mad about BFS is everyone says "it's anxiety" and stress is causing it. NO IT DOES NOT! It is an autoimmune neurological disorder. SO YOU HAVE NO CONTROL OVER IT! Now, there is a difference from BFS and just someone that say has the occasional eyelid twitch... now that, that can be caused by stress after a traumatic event or just plain old fatigued muscles from being on the computer too much. What i experience is full body BFS all day long none stop but i also get stiffness with it and the sleep disorder with it. Sometimes my muscles just stiffen up, the other day happened at work, had no control over my hand, and I spilled my coffee all over the place. My hand kept on wanting to close up in a fist position. I have a hard time walking when the temp drops below 65 because my always tight hip muscles get extremely tight making it hard to walk. I also get depressed breathing... feeling like i cant get enough oxygen (because it affects the muscles used for respiration) though i have not had that in a few weeks since i have been on a low potassium diet. I have had elevated creatinine for over a year now and that is common with this. How is that anxiety? IT IS NOT. I am not anxious or depressed. IF anything, people saying it is anxiety made me worse. I felt no one believed me and i blamed myself i guess. Finally, i came to except it is just something i have to live with forever. It is rare. Most doctors know nothing about it. It is the mildest form of neuromyotonia. It has nothing to do with ALS or MS. It happens likely after infection with Group A Strep  or viral infection (happens within a 6 month period similar to what happens with PANDAs in pediatric patients). It NEVER progresses. Getting sunlight and not eating a lot of vegetables helps me (avoiding things too high in potassium or if i want them just only a few bites).
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