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I asked

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Sammantha

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This latest EMG was done only on my thumb muscle, he iced my hand to the point of numbness then tested it. I do not have Myotonia. That is when i got up the courage and i said do i have a possible MND, he looked at me like huh? I said it again, then he said, today we are looking at your muscles to see if you have a muscle disease and you do not. Also we have ruled out a disorder of the peripheral nerves. So what is affecting your reflexes and causing the clonus is not in either one of those. The physical therapist is more concerned about my muscles AND she was the one who discovered the clonus as i did the walking test last year. The doc found out about it and ever since then because even though i have trouble with my muscles the UMN signs are more of a confirmation to him that something is going on. We stared at each other for a moment, then i said.. So i just go on as normal and something happen i contact you? He said, oh no we have to find out what is causing this! Then he said his secretary would get up with me for my follow up... I am at peace right now with not knowing what i have, but its the emotional side of me i fear. I fear for me and those around me, I think my mind has come to terms with the chaos of it all but my body wants to go bezerk..

Apparently i have brisk finger reflexes now and something about my stomache muscles... When he tapped my elbow the left side of my face started twitching like crazy! When certain reflexes are examined it hits me like a ripple effect and i feel it all over. Sam
 

irismarie

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Nov 21, 2009
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1,384
Reason
PALS
Diagnosis
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FR
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tarn et garonne
Oh, Sam that is enormous, what you are going through. HAVE YOU got loving friends you can let off steam with?
 

hopingforcure

Very helpful member
Joined
Feb 14, 2008
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1,420
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09/2007
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Oh Sam,
I am sorry you did not get any real answers. But at least this doc is going to see you again. I think you are talking about Cross-detection, I have that in a big way.. Not fun at all. I think your Stomache muscles have that reflex also. I think your finger reaction sounds like the Hoffman's sign. All these things are UMN problems. Is this guy a Neuromuscular specialist? I hope you are getting closer to an answer. Please let me know if you want to talk or need anything.
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
You did it! You mustered the courage to ask him! Good for you!
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
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Wow ... I'm glad you discussed it with him, and got a response ... and a promise to FINALLY get to the bottom of this?!?! Poor Sam ... what a journey you have been on ... and are still on.

Keep us posted.
 

rose

Extremely helpful member
Joined
Mar 29, 2008
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2,879
Reason
DX MND
Diagnosis
7/2008
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Maryland
Sam,

I'm glad you gathered your courage and asked.... that this doctor has taken an interest and vowed (maybe a strong word) to get to the bottom of this is huge. But, it would have been nice to have had a more specific answer. Maybe he just couldn't give you one.

I agree with Hoping, that it sounds like a cross detector. I have the cross detector at the knees. It is somewhat entertaining to see it happen. For the record, I do not seem to have much UMN involvement, so, a person does not have to be extreme to have the weird manifestations.

You hang in there, and keep us posted! (hugs)
 

nightwolf_mk

Distinguished member
Joined
Aug 1, 2007
Messages
107
Diagnosis
05/2012
Country
BR
State
SP
Hello, how are you? I haven't write here for a while... Well, I too have clonus and a lot of fasciculations. I had a positive hoffman sign in one test but this thing is too strange that after some time I returned to the doctor and he did the reflexes tests again and he couldn't find the clonus again. All of this is very strange. I am writing this because I would like to know if you already tried some vitamins to relief the symptoms. After some time I started to take calcium, magnesium, c vitamin, a vitamin, e vitamin and selenium and I could relief these strange things. When the clonus wasn't there anymore I was taking these vitamins for some time and the first time (when the clonus was there) I wasn't taking them. I couldn't say if this is a coincidence and asked the doctor about it and he answered it is not likely but who knows. I am writing this just in case you give it a try. Maybe it can help you to relief these things. I too don't know what is causing this. I had a bfs diagnosis but after three years I started to develop these brisk reflexes and the doctors don't know how to explain this and these symptoms is not suppose to happen with bfs so it is probably something else. There is a probability to be something that is affecting only de upper motor neurons but there is not an exam to confirm this, the doctor has to confirm this clinically but he doesn't know yet and I think only time will tell him what it is happening to me so I realised that the most important thing right now is try to relief these things and maintain my quality of life as good as I can. I think you should do the same and maybe these vitamins can help you with your symptoms. God stay with you.
 

Sammantha

Senior member
Joined
Aug 11, 2007
Messages
501
Country
Uni
State
NC
Thanks everyone........... I can talk to my mom but she has so much going on, not medically but just life in general... Other than that because i do not have a diagnosis, i cant say what it might be so for example my co worker asked why i have to go to UNC all the time and i told her that i have damage to either my brain or spinal cord and they cant figure out where. Then i told her how it affects my my muscles and my reflexes and emotions... She said, maybe you are bi polar! So needless to say noone that has not been around neurology or people with neurological conditions understands anything i say. Its not worth explaining at this point. Even when people ask me why i am dragging, why i hang my head or why i cant push a darn push pin into a hard wall! The one thing i am glad for is that i no longer am deathly sick from my gallbladder, i dont know how i survived that on top of everything else. Now that i am not sick from that i dont get susceptible to colds and such like i used to. I am trying to look at the bright side. At least whatever i have,, it is going slow and if something does go i know i have this board and all of you to talk with... You dont know how much ya'all mean to me... Lots of love, Sam
 
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