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kiara

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Nov 29, 2012
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69
Country
Ita
State
CR
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Crema
Hello, i'm 33 years old, female, married and mother of one son. It all started in last spring with weakness in my ankles and feet and in my left arm. I'm a nourse and i noticed that standing and walking at work was becoming hard, first i thought it was only stress but things were getting worse avery day so i went to my doctor. He referred me to a neuro that found that i have very brisk reflex in all my four limbs and noticed some twitching in my left calf. He ordered me an MRI, some blood test and an EMG. They all came back normal so he said we have to wait and see because there's something wrong with me but tests are normal. In October I had another emg that came back normal too but my condition are worsening, walking is very difficult because of the weakness of feet and ankles, the twiching is now widespread all over my body and now i also feel stifness in my neck, shoulders and arms, sometimes my hands are so stiff that i can't open them. It seem to me that i'm living in a bad dream, i just want my health back and if i can't i want to know what is wrong with me. It all sounds me like i have als but my neuro keeps telling me we have to wait.....i'm tired of waiting. I feel so alone and scary.
 
...sorry for my english, i'm italian :)
 
you're story sounds exactly like mine...down to the fact we are both 33. Only difference is my problems are mainly in my arms.
I'm also without a diagnosis. I wish I could help you, but I can only say (((hugs))) and pray we'll get answers soon.
 
Thank u for your words that helped me and make me feel i'm not alone in this terrible situation. I hope too we 'll find anwers as soon as possible. hugs
 
I had a clean EMG a year ago that I'm holding desperately to, but it wasn't a very in depth EMG and I don't remember the doctor asking me to engage my muscles so I'm concerned she may have missed something. I had no symptoms back then except numbness in my hands. I'm also holding firm to the idea that the neurologist was board certified at EMG and had 20 years of experience. I've just had every test under the sun and still have no answers. I've taken huge steps to handle my anxiety but alas...my symptoms persist (and are getting worse daily). You will find the people here to be so helpful. Sometimes there's tough love, but tough love is still love in my opinion : )
 
I had two clear emg, done in all four limbs, i remember the neuro asked me to engage muscles and he said there was nothing abnormal except some fasciculations. No denervation, no loss of motor units so nothing to worry about. Anyway despite clear tests i'm gettin worse, my feet and ankles are extremely weak: it seem they cannot support the weight of my body, they hurt and tremble when i stand. Working and doing all things is getting harder and harder. I think, as i have extremely brisk reflexes and weakness that certainly there's something wrong........so hard to wait. I agree with u, this forum is a very helpful place and is full of special people i hope to find the strenght to face what is happening.
 
My story is very similar to you too Kiara. Atrophy in feet difficulty walking . lots of twitches . More tests in the next few weeks. . Its been a year since the last. Previous tests over last 3 years emg MRI clear . 3 years ago evoked potential test showed blockage in spine and increased protein in spinal fluid but nothing to see on the MRI. Its so hard waiting to find whats wrong especially when you are slowly less able .
But please prepare yourself for a long wait . It happens to many people . Try live for each day and dont hunt down a diagnoses
Yes people here have a lot to offer with support and just their courage by example.
feel free to pm when you have more posts

XXX
 
Have either of you been tested for Lyme disease? It wouldn't be called that in Italy, and the test would be testing for different tick-born infections... something else to consider.
 
I thought lyme 16 months ago when I first became ill and my GP's exact words were "no obvious tick bite, coupled with the fact we don't really have ticks in MI, testing would be a waste of time and money". Now I suspect it, but I'm well aware of the controversy and don't even know where to begin since I can't get in with a lyme doctor for months.
 
Thank u for your answers and support, i haven't been tested for Lyme but i know that here in northern Italy the disease is present and it's called Neuroborreliosi so i think i will suggest this to my neuro. I don't remember any tick bite but I know that sometimes neurological simptoms appear many years after the bite, i've always lived in the countryside so it's something to consider. Next thing my neuro suggest is having a spinal tap.......as Oscar said it's really sounds me that I have to prepare to a long waiting hoping my conditions will not get worse too fast.
 
If they're doing a spinal, they should definitely check for Lyme as well.
 
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