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siuska

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Hi,
i had an EMG and NCV done on both of my legs and part of my back today and i am a little confused about the results...the Doctor performing the tests said that i had some atrophy in my left leg and neuropathy...i have been having body wide twitching and cramps for about three months now along with burning and numbness in my hands and feet...After what i thought was some pretty extensive testing ( 11/2 hours), at first ALS was hinted around but after the NCV the doctor told me i don't have those things, and that it might be due to back problems or bad shoes but why would i have atrophy in one foot and part of my ankle? He claims it is PN...But PN doesn't make a person twitch and spasm...And it just doesn't answer what the source of all my bodywide twitches and spasms? Everything came on quite suddenly, but i didn't know i had any atrophy until the EMG...i don't know if i feel better or worse after the test was done because i am still wondering...i also noticed that i am tired a lot and can't exercise the way i used to and any exercise makes me spasm...
C
 

crystalkk

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C,

Wecome to the wonderful world of wondering. Hang in there....
If something showed in the NCV, that is a good sign of something treatable.
In ALS the NCV is usually normal.
Have you had any other testing?
How was your nuero exam? reflexes, etc.
Did they say why they didn't do your arms?
 

siuska

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Thank you for responding...i did receive a neuro exam and MRI's and blood tests...everything was pretty much normal, although the MRI of the neck stated Degenerative Disk...the Brain MRI showed 'scattered abnormal white matter' but, this was not important to the doctors...i am pretty sore after the EMG and has really set the twitching (mostly in my legs) off. I am having a hard time with physical activity...i am so tired afterwards...
 

CindyM

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Hello C- those EMG's do set off the muscles, don't they? And I hear what you say about being tired (that word is really too mild to describe it) after any form of exercise. I took up knitting, even though it makes my hands cramp, just to have something to do since I am glued to the sofa most days. Who knew that knitting could be an aerobic activity?

Well, you are welcome to hang out with us while they sort it all out. :-D Cindy
 

androgel1970

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Hello Siuska

You said your NCV was abnormal . . . what kind of abnormality? What were the results of the EMG? And just as another note: you can have atrophy with peripheral neuropathy, because the nerves aren't talking to muscles and thus, causes them to get smaller.
 

siuska

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They also found P-tumor and Thyroid nodules on MRI's...

Thank you everyone for helping me through the waiting game...i meet with the Neuro to go over the results on the 25th of January...I am just relating what the tech and Neuro testing me said...i don't have the actual results, but probably should get a copy? i know there are all kinds of 'waves' they read to determine nerve dysfunction...i know i flunked the NCV for sure...don't know if the twitching showed up on tests...it didn't help anything to find out i had a pituitary tumor and thyroid nodules that was discovered when the Neuro's ordered MRI's to find out why i lost muscle use, ect....Well, i think the Pituitary tumor is under control(saw neurosurgeon and endo docs) and the thyroid nodules are non-cancerous, but here i sit in pain with twitches and muscle weakness with no diagnosis...i'd like to get back to work again soon...i am a film crew and stage-hand so i need my body back!
What should i be asking the Neuro on the 25th?
 

laurel

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Hi C,
My husband has abnormal EMG's. He has been diagnosed with CIDP Lewis Sumner variant. He has an atrophied right hand and lower forearm. He has had footdrop in the right foot as well. He has faciculations. One test that indicates CIDP is elevated protein in the Cerebral Spinal Fluid. Have you had a lumbar puncture? My husband has some sensory disturbances too which is common in CIDP. And he gets spasms in his hand. My husband had a query of ALS for awhile, and he dodged that bullet. I hope you dodge it too.
Laurel
 

siuska

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scared and looking for a cure

Jeez Laurel,
i am so glad your husband dodged that bullet and i hope i do too...living with not knowing is awful...i feel so deeply about what i have gone through already that i have signed up to advocate and volunteer for ALS patients...really, a reason and cure needs to be found and i don't think that there is enough advocacy for this disease, especially celebrities involved and Psa's to the public, not to mention financial and emotional support systems in place...
S
 

siuska

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Laurel,
i got on my soapbox and forgot to answer your question...no, i have not had a spinal tap...i will suggest that to the neurologist when i see him on the 25th...i get a list of questions and things i want to ask so i will put that down...i know he is checking CPK levels and metabolic muscle disorders along with EMG/NCV...which i had to wait a long time for...i have had MRI's but, i need one for the thoratic and lumbar...Cervical showed DJD but no stenosis...i have trouble going down steps but not up! i can pick myself up off the floor without arm assistance and can still walk on my tippy toes so i guess that is good...i really can't tell if i am getting worse...i think about the same....i have had PN misdiagnosed as Raynauds for a long while now... my work is very physical and i am slim-two things associated with ALS...
Has anyone else gotten tests for CNS and they find out all kinds of other things wrong?
i told you they found a pituitary tumor and nodules in my thyroid-makes me suspect what else they would find if they aimed their machines lower!
Jeez, i always ate right, didn't smoke and exercised...i'd be the last person to suspect some dreadful disease in...but i am 50 YO now. My mom is 82 and very thin and active...i always thought i'd take after her!
 

mammaberger

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Hi by pn do you mean peripheral neuropathy? I started getting red fingertips. I was told raynaud's too. My girlfriend has raynaud's and it's going from white to blue to purple. What exactly did you have going on in your fingertips? I am awaiting emg but am a long time going with no diagnosis.
 

siuska

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Peripherial Neuropathy

Hi Mam,
P/N is peripherial neuropathy...in raynauds your hands turn white, red and blue (it's called the patriotic disease!) and it happens during stress or cold.....
with P/N during an 'attack' the areas affected.
are usually red, shiny and inflamed...i get
a webbing effect from the blood vessels sometimes...my doctor says it's gobulins going to the site....and it can be constant or come and go...usually worse at night in bed.

the pain is burning or tingling, sometimes numbness...i usually get them in the palms and soles of my feet, fingertips and toes...i have had P/n just hit in one hand going up halfway towards the elbow...i think they call that stocking glove affect....
P/N in my case is a darn nuisance...i just am very careful not to vibrate or get my extremities cold...which is hard because P/n can make them cold!

i don't think it has anything to do with my fascics because i have had P/N a long time without twitch and cramp...or atrophy...i am worried that i might have ALS...
 

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Well at least you don't have atrophy, this is a good sign. Unfortuneately I have this redness and shiny skin, it almost see through along with constant twiching and now atrophy.
 

siuska

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sorry MaM,
got atrophy in my left leg- that's whats scary because i have been having fascics and cramping...no emg of upper body yet...
hope you get better news...better to have raynauds than PN...
it can be controlled better...
i tried beta blockers, but didn't work for me..
now i do Q10, fish oils, garlic and b vitz...
i suggest once you get your PN diagnosis to find a good naturopathic doctor....
 

siuska

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emg

oh, i forgot to tell anyone going for an EMG?
 

wright

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To Siuska

I just noticed your thread. As far as peripheral neuropathy: it can certainly cause muscle atrophy and sensory symptoms. It just depends on what kind of peripheral nerve is damaged. If it's a motor nerve, then weakness and atrophy can occur. If it's a sensory nerve, then you will have sensory symptoms. Peripheral neuropathy can affect both nerve types.
As far as the fasics: do you really know anyone who doesn't get them? Couple that with the fact that you're probably nervous about them because of the company they are keeping . . . that is . . . your muscle atrophy and weakness . . . and you will probably make them worse (stress and anxiety make fasics worse).
So how was your neuro appointment on the 25th?
 
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