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myooshka

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Sylvan Lake
Hi to all I am 16 months into my illness. I have been given mri,spinal tap,ncs all were normal. I have had the twitching since the beginning with extreme muscle fatigue but was never given an emg which I now see is odd as this seems to be the standard test for people with weakness and twitching. I was given two ncs which were normal and I was wondering if als/mnd shows up in ncs? I realize the emg is performed differently fom the ncs but could somone fill me in on the differences between these two tests? For others who it took quite some time for diagnosis was it because emg was normal at first or because it took sometime before this test was performed? With me they were originally thinking ms because I have sensory involvement so maybe that is why they have never performed an emg on me, I don't feel like I should have to know about these tests, it should br the doc's job to send for these tests. Well if someone can answer my questions that would be great. Also are floaters common with als/mnd as well besides the fact my tongue is shorter and scalloped I get large spots where my tongue is bald just red, I think it's called geographical tongue. It seems I have some of ms symptoms but then the muscle wasting which is my biggest concern. I am supposed to be seen at an als/mnd clinic on Dec 19th but it's not for sure, that's a whole other story. Well hopefully I'll get some answers soon, it's not that I want a diagnosed but I need the resources in place and the diagnosed is more for others than myself, at this point I've been living with this illness, it's more that my husband needs a name, let's just hope it's not mnd but my body is telling me this diagnosed is coming. Thanks to all on here for the support it means the world to me. It is such a blessing to have a place to come to with others that are having the same struggles. This forum has made me shed tears for others and for my family and I but most important has given me support, spiritual and emotional, friendship and many good laughs!We are all so lucky to have this forum and each other.Mya
 

mamaoftwo

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Mya - a quick one and will write more later but an NCS is typically normal in ALS and the EMG (needle portion) is not. If your NCS is abnormal I believe that points more towards neuropathies etc.
 

crystalkk

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pennsylvania
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philadelphia
Hi mya,

What are your sensory systems?
I hope you get your appointment on the 19th.
I actually have an appointment on he 19th with a new dr. that my als specialist is referring me too
it is an associate of his. I have all this atrophy and wealness but normal emg's can't figure it out.
Please demand an EMG.... I don't understand why they didn't do one yet.
I totally agree with you about the forum, I feel like this is the only place anyone can understand what we are going through.

Still no word from Sam.....she is in my prayers.... it is unlike her not to post what happened.
 

Just J

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Joined
Oct 30, 2007
Messages
300
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DX UMND/PLS
Diagnosis
01/2010
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US
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MD
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Havre de Grace
Hello Myooska. Sorry I can't help you with your question. My husband has been declining since Dec 2005 and no diagnosed. Naturally we don't want a diagnosed of mnd but lymes and MS has already been ruled out. His ability to walk declines every month. We're still trying to get in front of mnd doc. We're back to regular doc next week to find out path forward. I hope you get your appt on Dec 19. Please keep us all posted...we truly care.

J.
 

myooshka

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Aug 4, 2007
Messages
97
Country
CA
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alberta
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Sylvan Lake
Thanks just J I'll keep you posted I see my doc on weds he is phoning the clinic. I called the als clinic myself and the nurse told me it sounds not like typical als but some type of mnd and I should see the clinic immediately, she wanted me to come the next day but my husband was away at work so she said she would save me an appointment. I went to my doc who has been my doc for the last five months he referred me and then sent my info and the neuro I saw almost six months ago told me that my hands were just flat because I just have the hands of a child and the reason I have lost muscleis from pregnancy hormone and all this other bull****. Then he tells me there is no neurological reason for my symptoms therefore I must have a psycological problem and think I'm ill. So to try and make this short when this nurse gets this letter from this neuro she phones me and says dr***** is a well known respected neuro and colleugue and I have had many tests that have showed nothing(althoUgh my first phone call with her she was astounded I had never been given an emg) and this may not be the clinic for me. The nurse at my doc's office even told me that this nurse from the als clinic called the office to ask if my problems are psycological and the nurse said no that my dr knows I have a serious problem. So even with this referal from my doc she is telling me she is going to have to convince this als neuro to see me. She wants me to have my doc call her when I have my appointment. this has been as much as a struggle as my illness getting answers. I was unfortunate to lose both my parents in there early fifties the year I got ill and there is a family history of bipolar even though I have had no mental problems I could not find a doc or neuro to take me serious and then I had a pregnancy so they try to tell you it's in your head or pregnancy related. I have had it. I'll never understand how I had this clonus brisk reflexes and they still tried to tell me I'm crazy. I even went through psycological testing which showed I was normal but they still tried to tell me I'm crazy.At least I have a great doc now who doesn't see any of the psycological illness I supposedly had that was making me think i was sick. I need to get to this clinic. My hands are like skelatons my tongue is so short and scalloped and my smile looks so wierd because the face muscles are shrunk. My jaw is starting to seize up and I can't open it as far. I need to get some type of anxiety med now because with my throat feeling like it's closing off and my jaw it's really making me feel panicky. My Dr will demand for me I be seen, he will tell them it's not psycological and I swear if they refuse my doc's referal I will show up on there door step and then I may pull a psyco episode:evil:It just seems so ironic I'm fighting to get into an als clinic when it's the last place on earth I want to be. Crystal my sensory symptoms were lots of numbness and tingling in the beginning, I get the false burning and cold in my skin. Lots of little stabbing pains especially in the girls, there must be lots of nerve endings there. Well wish me luck on my never ending battle to get an answer!
 

myooshka

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Joined
Aug 4, 2007
Messages
97
Country
CA
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alberta
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Sylvan Lake
One more thing. Does anyone know if in Canada they will back date cpp payments. I am an esthetician and my work is all hands and upperbody and I have not been able to work since I got ill 16 months ago. I just find it hardly fair that because I never recieved the proper tests (emg) that I should have to wait this long to have some type of wage replacement. For others in the states with no diagnosis are you at least able to recieve some type of income or does this just come with the diagnosis?
 

Al

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May 25, 2004
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On
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I think they will but only 1 year. It should say on the site. Google Canada Disability or CPP.

AL.
 
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