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ALS/MND-like symptom progression?

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sjc686

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Once again: thanks to everyone for your responses. I majorly appreciate each one, so—thank you!

Just a quick update: I spoke to my neurologist today; I explained my left hand clumsiness and the facial symptoms I've been experiencing. I now have a brain and cervical spine MRI scheduled for the 30th.

I've been experiencing difficulties with my left hand for a few months now, it's only been fairly recently (within the past week or two) that I've really taken notice to its awkwardness. It fatigues very quickly, shakes/tremors subtly upon resting and rather noticeably during and after exertion (ie—I was scrubbing my bathtub out the other day, and afterward, whenever I'd move or extend my left hand, it'd tremble really violently). Smaller movements (turning the dial on the radiator, fiddling my phone out of my pocket) seem to take a lot longer than normal, that they require a lot more concentration... And the flesh on my palm between each digit is less defined than my right hand. I find it odd I am left handed, that it feels and looks weaker. Its movements are clumsier, I've noticed many more errors whenever I'm typing... Etc., etc.

Another strange thing that I've been noticing is that whenever I hold my phone up to my ear, my arm will start to feel as though it's being worked out—that I'm feeling the burn from lifting weights... I frequently have to switch my phone to my opposite hand whenever I'm using it to subdue that sensation. Never had that before, until very recently.

Anyhow, the neuro wants a scan with and without contrast of both my brain and spine. He didn't exactly explain what he was looking for, but wrote MS on the order.

So, the facial weakness, weak left arm and hand, full-body twitching... all still there. I can't think of anything that I did to my left hand that would make it feel weaker.

There's my update... Thoughts? :confused:

(Link to my previous thread: Concerns over ALS/MND symptoms)
 

Alyoop

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Leave it in the hands of the Neurologist and wait patiently until you have the scan results. Your neurologist will have told you if your examination inregards to perceived weakness versus Clinical weakness? You have already asked all these questions.
Aly
 

trfogey

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Nothing has changed since your last post in the other thread. Even your first post in this thread is identical to the last one in the other thread. Why do you expect that anyone would give you any different advice than you've already been given?

At this time, you don't appear to have symptoms of ALS/MND. You've had a clean EMG. You have no clinical weakness. You've had twitching for somewhere between 3.5 and 5 years, yet you have no disability. One of your doctors suggested BFS as an explanation for your twitching, yet you reject that diagnosis as "too vague", even though it is a far better fit for your symptoms than any MND.

Come back with some new information -- like after you've received the results of your MRI that you've been scheduled to have -- and the picture might be clearer. Until that time, starting new threads simply to repeat old information is a waste of time and pretty selfish and obnoxious to boot.
 

Northern Dancer

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Sic,

It is scarey not knowing what is happening, isn't it. Most of the forum members have felt exactly as you do at some time. Rest assured that our job is to listen and give support not to judge.

Best wishes

ND
 

sjc686

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Yes. Yes, it IS veryscary. I mean absolutely no disrespect to anyone on this board by posting my concerns—my intention is not to ruffle any feathers.

I have come here while in the throes of overwhelming anxiety and fear—true. I've no doubt that every one of you is accustomed to having observed many individuals flit to-and-fro between the board's threads, undoubtedly aflame from their anxieties relating to a possible MND diagnosis. Again, I may be no different.

Understandable, too, that the majority of the members on this board would tire from individuals much like myself who seem to have an infinite amount of concern as well as abundant amounts of symptoms (some-to-many possibly being exacerbated/caused by the stress and/or anxieties that have brought said members here in the first place).

All of that being said: I've turned to this board, to each one of you, not to be judged. I have turned to you all for your expertise on the subject of ALS and motor neuron diseases. My symptoms, even though they began 3 or so years ago with isolated foot twitching and cramping, are increasingly frightening with each passing day.

So, to those of you whom I have offended with my persistence and/or frustrating curiosities, I offer my most sincere apologies.

It all boils down to uncertainty and the anxiety that spirals out because of it. To only have twitches, I catch myself thinking, what a pseudo-luxury. No, as you've read, I not only experience twitching (which are now body-wide), I am experiencing left and/hand weakness, tongue twitching and other bulbar-like symptoms (ie over-salivation, constant throat clearing, etc). All of that information aside, I realize that you are not neurologists, but you are all experts on these diseases, and so I turn to you for assurance and direction.

Thank you, as usual, for having taken the time to read this.
 

wright

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The reasons your story points away from ALS:

1) Bodywide twitching with a clean EMG in four limbs means that the twitching is not due to ALS. As your medically trained neuro said . . . BFS is the more appropriate diagnosis.

2) Bladder issues have absolutely nothing to do with ALS (unless of course you can no longer walk and can't make it to the bathroom in time). The bladder is under the control of the autonomic nervous system, which in part controls smooth muscle . . . and smooth muscle is not affected by ALS . . . only skeletal muscles (i.e. the muscles that attach to our bones and control our movements).

3) Excess salivation is not a symptom of ALS unless you have swallowing issues. Excess salivation with ALS is due to the inability to swallow the saliva . . . NOT . . . its over-production.

4) Your perceived weakness is just that . . . perceived . . . and obviously not clinical weakness, because your neuro would have taken note of it.

5) Your excess yawning is not a symptom of ALS but more than likely is due to anxiety . . . or . . . you're really tired because you're not sleeping because of the aforementioned anxiety.

6) You claim to have bulbar symptoms (which you don't) and symptoms in both feet and hands. ALS does not present with symptoms in all four limbs and the bulbar region at the same time. It most often presents with a single area being affected and then it marches to another area.

7) You are only 24 and the number of people that young that are diagnosed with ALS is astronomically low.

This is the most important one: your neuro fully evaluated you and told you that you don't have any signs or symptoms of ALS. I repeat: your neuro fully evaluated you and told you that you don't have any signs or symptoms of ALS.

I hope that helps. I wish you peace. Now go enjoy the holidays before you miss them all for no apparent reason.
 
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TedH5

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Let your Neuro do the tests he has ordered and see where it goes. As everyone has said it does not sound like ALS and your Dr has previously advised you that it does not seem you have ALS. Those are all positive things that you should focus on. Just know we are here to support you. Stay strong and keep the faith!
 

LizT

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All these folks have said what needs to be said. Sounds like you are in the clear for ALS. You should be very happy.
I do understand how horrifying it can be when you dont have answers and something odd is going on with your body. Dont apologize for feeling this way and asking questions. some people on here seem to forget what its like when there arent answers right away. some people on here seem to forget that this is supposed to be a SUPPORT GROUP.
 

sjc686

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I realize I'm tiring—I'm incredibly exhausted myself.

I am now experiencing intermittent throbbing pain in my left shoulder, followed by twitching.

The facial twitching is scaring me, I remember reading somewhere that if it lasts longer than a week it's likely indivicative of a more serious problem. My tongue is also included in said twitching.

I'm not asking for anyone to repeat themselves. I'm only concerned with the progression of my symptoms; there seems to be something new every week! Either something's new, or something old as worsened.

Typing this message out has made my right hand and forearm very tired; I used to be able to type for hours and not experience this sort of fatigue. My right shoulder all the way to the bottom of my right ear is experiencing a similar ache to my left shoulder.

I've been doing 15-20 or so pushups a night to make sure I'm still able to. Is my ability to do so something that ought to reassure me that things are likely okay?

One final thing, when I reached to dial a number at work today (with my left hand) my index finger wasn't punching the number pad down on the 3 key... Until I looked at the finger and concentrated on the action.

Anxiety is at an all-time high. :-\
 

TedH5

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Not sure of where you read that twitching for more then a week is indicative of a more serious problem. I have read exhaustively on the subject of ALS and do not recall seeing that. It is important for you to realize that the only person who can diagnose you is a qualified Neuro. You do yourself a disservice by allowing yourself to become more anxious. Whatever is wrong you can not do anything about it so do your best to put it out of your mind until you see your Neuro and see what they say. Enjoy the Holidays!
 

Al

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Nothing you wrote today points to ALS. Give yourself a break, quit looking for every little thing to be ALS. You've become fixated which only makes you think you're sicker than you are. You're probably causing most of your symptoms with your own mind. I'm no doctor but I've seen plenty like you. You MIGHT have something but it's not ALS. Not today anyway.

AL.
 

Alyoop

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When we get very very anxious, it causes a load of symptoms like you are explaining. You are feeling a progression of these symptoms because you are getting really exhausted. I think you are aware by now, that you do not have ALS, which is truely something to celebrate, You are still worried that you have something. Maybe this forum is not a good place, as so many people are very very sick and dealing with massive changes to their lives. Its possible to read about all these brave people and become a little fixated, frightened even. Its possible to try and imagine how we would cope if we had ALS and it can become a bit of an obssession.

Trust in your doctor, be patient. If something neurological is happening, then playing the waiting game is unfortunately what you have to do. There are heaps of viruses that cause numerous symptoms that slowly go away in time. None of the symptoms you are having are serious, just annoying. I promise that you will feel better once you drop the obsession, I can tell you that from experience. I was told I may have ALS before I really cared what I had, because my husband is a neurologist and got over anxious about my weakness. He was obsessing (can happen to anyone). His obsession caused me to feel panicky, so instead of just the fasciculations I was having, I got Myokymia (twitching) everywhere, My lips would go hard at it, arms, legs . Fingers had a mind of their own. Now a year has passed since I got him to calm down, I am now calm and wow guess what? All the twitching has stopped and life has got back on track.

I am telling you this because I so want you to relax and be happy again. It can and will happen.

Aly
 

trfogey

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If you really are experiencing "something new every week", then you need to be banging down the doors at your primary care physician's office. ALS and the other MNDs do not progress that quickly, as you have been told multiple times since you got here, but there are other medical conditions that can progress that quickly. Things like strokes, brain tumors, post-viral syndrome, and other disorders of the brain and nervous system. By dithering around on the Internet instead of going to the doctor (or the hospital emergency room if necessary), you might just be allowing something that could have been treated easily at an early stage to do damage that might not be able to be undone.

It's your call to make. There's nothing scarier than permanent damage that can't be fixed.
 

sjc686

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MRI results (I'm only listing my C-Spine results as the MRI of my brain came back completely normal):

C-Spine:
Sagittal T-2 weighted images demonstrate decreased dis signal at multiple levels of the mid/upper cervical spine. There is no subluxation or cerebellar tonsillar herniation. The cord exhibits normal signal and diameter. There is no cord compression demonstrated. No abnormal enhancement.

At C2-3, there is no evidence of disc bulging or herniation. There is no spinal or neural foraminal stenosis.
At C3-4, there is minimal diffuse disc bulging. There is minimal bilateral neural foraminal stenosis.
At C4-5, there is nild diffuse disc bulging and hypertrophy of the unconvertebral joints. There is minimal bilateral neural foraminal stenosis.
At C5-6, there is mild diffuse disc bulging. There is minimal bilateral neural foraminal stenosis.
At C6-7, there is no evidence of disc bulging or herniation. There is no spinal or neural foraminal stenosis.
At C7-T1, there is no evidence of disc bulging or herniation. There is no spinal or neural foraminal stenosis.

Sagittal images also demonstrate straightening of the cervical spine from C2 through C5. This may be secondary to muscle spasm, or positioning.

Impression
1. There is no evidence of demyelinating process or abnormal enhancement.
2. Multilevel mild cervical spondylosis with diffuse annular bulging and hypertrophy of uncovertebral joints as detailed above.
3. At C3-4, C4-5 and C5-6, trhere is minimal bilateral neural foraminal stenosis.

The mild cervical spondylosis is what is really worrying me... What I'm to understand is that a lot of individuals with ALS were seen to have cervical spondylosis—that the two have been seen to coexist, and the differentiation is the difficult part.

I'm more worried now than I was prior to getting this MRI. Anyone's input would be greatly appreciated.
 
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