Old 01-03-2014, 06:37 AM #1 (permalink)
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Default My doubt...

Hello, i hope all people good here. I have a lots "rare" symptoms, for example vibrating continuosly my feets with twichting in feet, legs, and all body, I have low muscle development because I have Marfan Syndrome and this is of the one characterism of this syndrome (poor muscle development), I feel my mucus grows in my nose (feels like sinusitis), my twitchs are greater in rest, for example when I sleep in the night if I move to change position in the bed if possible to feel twichs ( I take lormetazepam pill for sleep). I feel low weakness in my arm for moving mouse and click the mouse buttons, is not obvious but I feel rare. I went to the neurologist yesterday and she did all test and all fine (include Babinski, Hoffman, strong tests in arms, legs, feet, hands) She saw my tongue etc etc. She saw a twichts in my back. My neurologist thinks is a benign twichs, she orders an EMG for end of February (I think is much time but is Social Security in Spain). Im scare because I think is a ALS bulbar onset. Thanks for reading.
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Old 01-04-2014, 10:59 AM #2 (permalink)
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Default Re: My doubt...

Bulbar onset involves trouble drinking liquids and slurring of speech. You did not mention any of that. I would wait and see what the drs have to say. This could all be stemming from your Marfan Syndrome.
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Old 01-04-2014, 12:42 PM #3 (permalink)
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Default Re: My doubt...

Thanks for your answer Vicki, really aprecciated. I dont have problem with drink and eat food at that moment, and speech normal too.I read sometimes bulbar onset in extremities but is not so usual? My EMG is too far (27 February) but only way is patience, my neurologist doesnt worry about it because she put normal priority for the Emg test, I supposse if she has high suspect about ALS the priority was diferent. Again, thanks for your answer.
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Old 01-04-2014, 12:57 PM #4 (permalink)
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Default Re: My doubt...

Yes, if your doctor was worried then you would have an earlier appointment. Just be patient and wait it out. Good or bad the wait won't change the out come and neither will worry. So relax and spend this time doing something enjoyable.
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Old 01-04-2014, 01:43 PM #5 (permalink)
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Default Re: My doubt...

Yes, I only can wait. I hope the symptons stay stables during the waiting time.
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Old 01-06-2014, 10:01 AM #6 (permalink)
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Default Re: My doubt...

I have a problem now, I feel weakness in my right leg, i can walk but I feel my knee not stronger, is possible the weakness appears three days after my neurologist test my strenght?
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Old 01-06-2014, 10:30 AM #7 (permalink)
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Default Re: My doubt...

I seriously doubt it. Feeling weak and being weak are two different things. What you are describing is not clinical weakness.
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Old 01-06-2014, 10:35 AM #8 (permalink)
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Default Re: My doubt...

Ok, thanks for your answer Vicki.
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Old 01-06-2014, 10:43 AM #9 (permalink)
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Default Re: My doubt...

I have cramps in my hands and my feet archs. This situation is horrible
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Old 01-07-2014, 02:42 PM #10 (permalink)
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Default Re: My doubt...

Im very worried because the cramps continues in my hands and feet, I have twitches in them too, and I feel cramp above the tongue, I dont know what I do about it.
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Old 01-26-2014, 03:55 PM #11 (permalink)
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Default Re: My doubt...

Is possible develop brisk reflexes in 24 days? when I visited neuro (24 days ago) i dont have brisk reflexes in knee, but now i saw brisk reflexes in one knee , the other kneei dont test because im scare. Thanks.
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Old 01-26-2014, 07:05 PM #12 (permalink)
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Default Re: My doubt...

You test your own reflexes? (rhetorical, you don't need to keep replying here)

Get back to a doctor, ask them your questions and get real answers so you can work out what is happening.

Cramping is not an ALS symptom, so please work with your doctor and I wish you the best in finding the cause, but ALS just should not be your first worry.


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Old 01-27-2014, 01:43 AM #13 (permalink)
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Default Re: My doubt...

Thanks for your answer Tillie, I have appointment for EMG in February (27th), I will try to get appointment with GP for get answer to my new questions because the appointment with Neuro is much after EMG (May) and is for Social security. In the appointment with Neuro 24 days ago she said i dont have ALS, she applies me complete clinical test and she said that (EMG in his words ordered for dissappear my worries) but after this appointment new symptomps appear, I hope GP give me some answer before the EMG. Again, thanks for your time and your answer.
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Old 02-24-2014, 04:38 AM #14 (permalink)
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Default Re: My doubt...

In four days I will do EMG. My symptoms are worse now. I feel pain in my legs when I walked, twitches in all body and cramps in my tongue, and atrophy in my hands ( I believe I have Dupuytren contracture because my small fingers in both hands are bad) I dont have problems to talk or swallows but I not feel good.
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Old 02-24-2014, 05:01 PM #15 (permalink)
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Default Re: My doubt...

From what I have been taught in school/ read in school Dupuytren's disease, to put it in a less medical fashion, has to do with tissue contracture, and has got no connection with MND. However it can cause curling and/or deformity of the fingers, and affect movement.

I hope your EMG turns out well.
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