In hospital, really scared...

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In hospital, really scared...

Postby sanje77 on May 11th, 2015, 11:29 am

Hello, I'm in hospital right now going through a diagnostic process due to a number of weird symptoms that have been getting worse and worse over the past 8 months. I'm extremely worried :-(
I first noticed fasciculations in both feet 8 months ago. Prior to that I had tight and 'overworked' feeling muscles in my right arm. My doctor at the time noticed very very obvious atrophy in my left palm (thinner muscle) which sent me loopy with fear, thanks to Dr Google.
I found this forum which calmed my fears about the twitching (which by then was all over my body, though remaining constant in my feet to this day). Physic therapy helped my arm a bit, but I since developed unbearable feelings of weakness in both hands. I also started getting food stuck in my throat constantly and my tongue started burning like I burnt it on soup.
I had 3 EMG's over the pat 6 months. First one was normal, second one showed large MUP's (chronic denervation) in my right hand and number 3 was just performed yesterday and showed large MUP's in all muscles tested (both hands, chest muscle and calf). The neuros here don't know what's been causing it. They said it's reassuring that no spontaneous activity was recorded (i.e. fibs and positive sharp waves). Still I am beside myself with worry, as my EMG's have changed over quite a short period of time. The docs want me to come back in 3 months for further testing.... I'm scared that next time the really nasty stuff is going to join the party in my EMG.
Had ANYONE here had an EMG that showed large MUP's with no explanation?
Needless to say, my twitches are out of control right now, especially in my feet. I forgot to mention that I also have a very sore ankle which has been like it for 5 months. I'm trying to think of the positive aspects. Normal reflexes and I can to the toe-heal walk. However weakness was found in my left thumb.. Docs are saying maybe some kind of Polyneuropathy, but the thing I'm really scared of is you-know-what.
I don't know how I'm going to cope waiting another 3 months for the next EMG. They're keeping me in hospital for another 3 days on anxiety medication, as I'm quite beside myself right now.
Sorry for rambling (must be the meds)... Really all I need to know if anyone can relate and has possibly had similar EMG findings in the past.
Thank you for reading, the very best to all of you twitchers out there x
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Re: In hospital, really scared...

Postby nickston on May 11th, 2015, 11:40 am

I had all kinds of weird abnormalities on my emg back in 2010 and 2012. Including large MUPs of unknown origin. Subsequent EMGs were clean. I'm still doing fine today. Hang in there, lots of things can cause your symptoms.
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Re: In hospital, really scared...

Postby sanje77 on May 13th, 2015, 6:59 am

Thank you , nickston. I just spoke to the head of neurology here at the hospital and he assured me that with ALS they definitely look for more than chronic denervation. Absolutely no spontaneous activity was seen, and while I have weakness and atrophy, he reassured me that after 8 months of symptoms they should definitely see more on EMG. I'm taking this with me and hope that the relief of anxiety will calm my symptoms somewhat. Maybe this note will also be read by someone on this forum with similar concerns about EMG results.
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Re: In hospital, really scared...

Postby HonkeyKong on May 13th, 2015, 9:26 am

Really good hear Sanje. Hope you start feeling better soon.
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Re: In hospital, really scared...

Postby German2 on May 16th, 2015, 1:44 pm

Dear Sanje,

your post reminds me so much of my own symptoms and story...Well, the only difference is that my story lasts already about 3 or een 5 years to take into account the earliest symptoms..Now I have big MPUS in all tested muscles (last EMG one month ago). Paresis was found in my left small finger. I was in neuro hospital three times. Last time with suspected MND. But clinical was always ok, like yours. And no spontanuos activity as well..I had body wide twitching in whole body for a while. Than just in my feet. Actually they are down. My ankles are also very sore sometimes and my lower arm muscles are so tight that they hurt like hell..I also had atrophy in my palm 2 years ago, but it went away again. Hard to imagine but true. But now I have different problems. Tight muscles everywhere. Semicramping...

The doctor was telling me that maybe I could develop a polineuropathy in a few years and I should come back in a year for follow up.

Meanwhile I kind of get used to periods of fear and anxiety, because of the long duration...I am quite the same as you are...hope that this makes you feel not alone with your situation. I keep my fingers crossed for you. Drop a line how it goes!
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Re: In hospital, really scared...

Postby German2 on May 16th, 2015, 1:49 pm

By the way...the palm and weakness in left thumb symptoms especially reminded me of my own symptoms and I developed a sulcus ulnar nerve syndrom on the left side over the time. So that could be the same story....Did they check your NCV?
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Re: In hospital, really scared...

Postby sanje77 on May 18th, 2015, 12:22 pm

Hello german2, i only just saw your message. Thank you so much for sharing your experience, i can't even tell you what a comfort your story has been for me, especially as you have been dealing with this without a scary diagnosis for so long! Your symptoms do sound incredibly similar to mine. Except, your fascias started everywhere and moved to your feet and mine were just in my feet and then moved everywhere :-)) How scary for you to have been admitted to hospital with suspected MND. This has been my second stay at hospital. As your name is german, can I assume you are german? If so, do you happen to live in Berlin? I have been in the neuro department of Charité and then Schlossparkklinik last week. No real diagnosis, but as I wrote before atrophy and paresis was found in my left thumb (much much weaker than right). My EMG results you know, everything else was normal except a slightly heightened protein in my liquor (which is non-specific though). My reflexes were described as very lively, but not pathologically heightened. They have ruled out autoimmune disorders and, because of the lack of spontaneous activity in my EMG plus ok reflexes, ALS. They suspected an old polyradiculopathy (possibly from a virus infection), so a nerve root disorder with benign fasciculations. But I have to have another EMG in 3 months, which I'm very scared of.
I get the semi-cramps you describe too, especially in my troublesome right leg, along with fascics. My hands are functional but weak, my thumb pads hurt every now and then. So much weird stuff going on. It's so good to hear a similar case. Why does your doctor suspect you might be developing a polyneuropathy? Thanks, sanje
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Re: In hospital, really scared...

Postby sanje77 on May 18th, 2015, 12:25 pm

PS: My NCV was totally normal. About 5 months ago there was blockades in median nerve and left leg, but now it's all normal again...
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Re: In hospital, really scared...

Postby German2 on May 24th, 2015, 2:30 pm

Dear Sanje,

yes, I am indeed German. But I do not come from Berlin...The doctor thinks the chronic neurogenic changes could lead do pnp...but as I have discovered that a high muscle tone is responsible for most of my problems, I think this might not be the case, because this is a central thing. I had horrible days last time. I have to take medication against high muscle tone now, and I woke up without any voice. So today was just horrible...
On the other hand, my clinical was ok two weeks ago....not pathological reflexes. Just reduced power in small finger, left side..
I will go to a doctor tomorrow to check the voice problem and its origin..Maybe it is just from a cough. It was just that no sound came out of me the hole day...Hope for the next. :)
Yes, Sanje, our stories are quite similar, really. And my twitches also started in feet and legs, then spread...But since a while I have just twitching in my hotspot, left foot. Maybe it is from stop of eating gluten since January. But this is just a speculation..

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Re: In hospital, really scared...

Postby sanje77 on May 28th, 2015, 9:41 am

Hi German,

my hotspot is my foot as well, well both feet really. They are twitching ALL THE TIME. Sorry to hear about your voice scare, it's reassuring though that it's gone back to normal. I have some bulbar concerns myself, as my tongue has lately been extremely sore, like I burned it on soup. This has made me very aware of my speech, I'm feeling like I'm stumbling over words, biting the tip of my tongue, and every now and then my voice breaks when I talk. I've been told that this might be psychosomatic, from all that fear and worry i'm experiencing. I hope so , who knows... I'm actually starting therapy next week (something I never thought I would do), but I think it will be good to not load this stuff on my family and friends so much anymore. I still worry about those EMG results and chronic denervation, even though docs told me they would see spontaneous activity if it were a motor neurone problem... But increasing symptoms just make me doubtful. I'm sure you can relate, considering yours have been going on for so long. Doctors have told me that after 8 months of twitching they would definitely see more. And I think we can both rest assured that our reflexes are not considered abnormal.
All the best to you.
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Re: In hospital, really scared...

Postby German2 on May 30th, 2015, 3:10 am

Hi Sanje,

yes, thank god, my voice is back. I have big big problems with muscle tone though..And muscle wasting on lower arms. This makes me scared...really. But yes, reflexes are still normal. I just can wait...Same with me. I have no spontanuos activity yet in EMG. just chronic neurogenic changes..But as you said. Hope that the rest won't join the party later.. :oops:
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Re: In hospital, really scared...

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