Old 03-12-2009, 10:04 AM #1
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Default symptoms neuro please read

Good morning, I am a 24 year old male from Mexico and I am pretty scared about ALS which I came to know last week "thanks" to this forum.

I've been having symptoms starting 10 months ago, my left shoulder started to waste with a feeling of pins and needles. Over a course of the next 4 months it reached my right shoulder. This 5 months I didn't give much attention as with ALS early symptoms.

Then, 5 months from now I started to lose strength in my shoulders, I wouldn't lift weight past my shoulders as I did before. I really started to worry 3 months ago when my abdominal area started to weaken, suddenly I was not able not to sleep well in bed beacuse I couldn't move with ease I felt like a rock, strange too that I couldn't stand the Push up position.

Finally 2 months ago, my first fall, wrong step I went all the way to the ground, my arms neither my legs had the strength to support. I felt like my legs didnt responded to me. A month and half ago I decided to bring myself to the GP as I observed some wasting now in my right thigh with the same pin and needle feeling. She ordered bloodwork which the result came within the normal range, so then she recommended an appointment with neurologist.

3 weeks ago the first appointment with neuro, very light examination and he ordered an EMG, and from a very light examination he speculated some inflammation issue. Then a week ago I fall for the second time crossing a street I loss balance trying to hurry my walk, legs didnt responded again and I hit my head and I remember it was very hard to stand up, I WAS SO SCARE IT NEVER HAPPENED BEFORE.

The contradiction is that in my second appointment last tuesday my EMG came out clean,
and he diagnosed Myopathy without any further examination. He prescribed a corticosteroid.

Now

I started to feel fasciculations all over my legs this week and I am scared to death that may be ALS, I dont know if it was for good or bad that I found this forum because now I am convinced neuro is wrong because of reading symptoms and this forum my issue points towards some MND I want to seek a second opinion.



My EMG, Is it too soon? like the thread here


What do you think any comments.


Thank you
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Old 03-12-2009, 10:24 AM #2
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Fuanh,

If you were already beginning to experience weakness to the point of not being able to lift weight above your shoulders, and starting to experience falls, then your EMG was not too soon. A properly performed EMG can sometimes detect problems before weakeness sets in. I'm inferring from your post that the corticosteroid is not helping.

I do not know what resources you have available to you, but I think now would be the time to pursue a second opinion with a neuromuscular disease specialist as opposed to a general neurologist. There are still a number of different conditions that could cause your symptoms, but if you are starting to fall and lose balance frequently then you need to be seen promptly. Make sure you mention the fact that you are falling frequently and having trouble standing, and hopefully they can speed your appointment up.

Best of luck,

Robert
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Old 03-12-2009, 11:02 AM #3
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Thanks Robert, actually I haven't started yet the corticoesteroid therapy because of all of the side effects and how the neurologist did not give explanations at all. I want to seek a second opinion with a better one before starting any heavy drug, I will for sure look for someone specialized in MND.

The thing is that what is scaring me the most is that everybody talks about having twitches and ok is alright no ALS as long there is no weakness before, everyone talks about weakness prior to twitches= ALS suggestive and most worriers I read dont have that exact combination as I do!

Is ok I had a clean emg but I cant get out of my head weakness before twitches= ALS
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Old 03-12-2009, 12:42 PM #4
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If I were you I would start on the medication and deal with the side effects. The dang doctor is trying to treat you which is much better than an ALS patient can get.

He is also better trained than anyone here on the internet.
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Old 03-12-2009, 01:25 PM #5
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Good point ktmj, I wouldn't doubt about his expertise, he is from a good Hospital center but then sites like this with such an insight on diseases like this confuse me.

So far the info I regarded

1. My case: Onset of symptoms over a period of several months + weakness before fasciculations = ALS

2. Neuro diagnosed Myopathy, but isnt it supposed to be extensive examinations before a diagnosed, also I had a clean EMG along with a clean NCV, this test are supposed to throw evidence of Myopathy right?
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Old 03-12-2009, 01:49 PM #6
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Your point number 1. about weakness before fascics is simply not correct. That is some bad info. Everybody is different.

I don't know enough about EMG and myopathy to comment on point 2.

Good luck on your medication. I would try that before assuming I had ALS.

Best wishes.
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Old 03-12-2009, 02:45 PM #7
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Hi Fuanh,
It sounds like your neurologist is querying an autoimmune myopathy or perhaps an immune polyneuropathy. Thus he wants you to try corticosteroids. You are 24 years old and are unlikely to develop major complications to the corticosteroids in a short time period. But the potential problems of corticosteroids can be monitored i.e. regular fast blood sugar tests, adding calcium supplements for potential bone loss, regular opthalmologist visit to monitor for cataracts. Also the doctor can prescribe pulse steroids which product less of those side effects. My husband has CIDP MADSAM variant. He had weakness and loss of strength over a couple of years which lead to atrophy of his right hand. One of the first line treatments for his condition is corticosteroids/and or IVIG. He takes monthly IVIG treatments. He has fasciculations that developed late into the atrophy process with him. The sooner you start some treatment the less damage to your body. My husband was misdiagnosed with Carpal Tunnel and wasted two years or more while the disease ran rampant causing permanent axonal damage to nerves. If he had gone on to corticosteroids he wouldn't have the disability that he has now. And second opinions are good, but you can still engage in treatment and get another opinion.
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Old 03-12-2009, 03:04 PM #8
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Fuanh

The symptoms you describe can certainly be attributed to a myopathy (including the muscle twitching) but if you have a myopathy (especially to the point of seeing muscle atrophy and having the weakness you indicate you have) your EMG cannot be clean. Maybe you didn't hear your neuro correctly and he said the EMG was not inidicative of ALS.

I agree with what everyone is telling you: you should get a second opinion but in the meantime, you should start the steroid therapy as soon as possible. If it is a short-course, it shouldn't cause many (if any) side-effects.
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Old 03-12-2009, 03:28 PM #9
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Thanks.

Laurel, indeed neuro will see me in 2 weeks to see how am going with the drug. You are right a second opinion while taking the drug will be the best now.

Wright, is strange because I get to see the EMG result paper where it said the 4 limbs where normal. I hate this but I guess maybe it was not properly done.

Odds seem in my favor because of age but these symptoms are hard to ignore and so stressful. Ill start right away the drug therapy to not waste more time.
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Old 03-12-2009, 03:34 PM #10
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Good - let us know how you do OK? We like to hear success stories if someone has found an answer.
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Old 03-12-2009, 03:36 PM #11
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Also the twitches are very new as I stated in my first post, I started to feel conscious about them a week ago, its odd but basically at the same time I discovered ALS. All this after my EMG. I just hope they are anxiety driven ones.
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Old 03-12-2009, 03:37 PM #12
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Ill keep you posted..
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