in hospital - suspected Als..

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Re: in hospital - suspected Als..

Postby German2 on February 4th, 2015, 9:43 am

Yes...living in permanent fear desroys life completely...and now i have to completely new symptoms...reflux and resulting swallowing issues sometime and spontanuous headaches. Seem to come from my spine...and it is so hard to sit here wkthout any investgagions. Again One day just waiting. Fear came back and hit me down on the floor. However this ends...this is nothing which leaves me with sanity. Thank you for sharing ghoughts with me...it helps me a lot here in my bed...
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Re: in hospital - suspected Als..

Postby kitras219 on February 4th, 2015, 10:05 am

Hello!
I have awful pains in random pkaces of mu body but 70% of this are in left side of my body (neuropathic type). I have spontaneus headaches and migraine, ilusually when my anxiety is high.
Body wide twitching is obvious... And a lot of sensory symptoms.
My neuro thinks about spine issues, neuropathy or just anxiety.
Im in 15 months at least. Keep calm ;-)
Greetings from Poland!
When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile.
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Re: in hospital - suspected Als..

Postby German2 on February 4th, 2015, 10:14 am

Thank you for sharing this with me...the stupid thing is that i expect the story to proceed. Even if they rule out mnd once again. Because of worsening symptoms. As long as they do not find any other explanagion i will live in fear for my next paralysis...it is hard to relax when the doctor seems to have still the worst things on his list...
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Re: in hospital - suspected Als..

Postby Yuliasir on February 4th, 2015, 12:53 pm

"silent" lesions are those wich were not discovered by other methods. Evoked potentials were used widely before MRI era just in order to discover in which segment neuroconduction is compromised and to study brain cortex involvement into motoric reactions. VEP (visual potentials) are used to make differential diagnosis of MS and other diseases affecting optic nerve, etc. Brain couold make various strange effects but it could not affect conduction studies results, so if they would be within normal limits, this would mean that your neural system is physically OK and interruption exists somwhere on other levels.
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Re: in hospital - suspected Als..

Postby German2 on February 5th, 2015, 11:37 am

Update fourth day in hospital...
today was a crazy day....they said examinations maybe tomorrow..another day without any activity. I told a nurse that i cant stand this any longer...then she puts pressure on neuro department...my husband called the doctor same time. In the end they were very angry about me...anyway. the do tor told my husband
that he is suspecting it is all anxiety driven. That was before the neurophysiology...i know something was not ok....they shocked me with so mu h electricity from head to toe that i almost fainted.but my left motor nerve in leg did not answer propperly in the mep and of course sulcus was not ok...after that i was taken from cancer to neuro department. I have the idea that this is a bad sign because they told me before i could leave tomorrow. So why moving me internally..it is such a horror. Waiting game proceeds in a more comfortable bed...
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Re: in hospital - suspected Als..

Postby German2 on February 6th, 2015, 12:58 pm

final update: I left the hospital.
I had the final talk with the chief neurologist who lead all my investigations. He said, neither als nor ms would be the case. All of my nerve checks were ok, apart from the sulcus ulnaris left side. No need to worry. Nothing to be found on the neurological side (though no EMG was made). So if I would have pain, it must be something else. f.ex rheumatic.My paralysis would have been due to the ostheopathic treatment. It was a kind of functional black out and happen from time to time. The neuro also told me, he has himself such twitches under his feet, the same like me. Especially after a run. And many bodybuilders do have those twitches...Nothing to worry about. He also told me persons with als would have a special habitus. And I don't have that habitus. That's what many neuros mean by saying...they can recognize an als when it walks through door... I know he is an excellent neuro, very intellectual, 40 years of experience and he diagnosed one of Germanies' famous painters with als many years ago...So I really think I can trust him.

Ok, I am not in a party mood now. That was one of the hardest weeks in my life. It was not me who mentioned the als/ms suspect. It was on my patient folder, underlined. My fear lasted until the very last day...and know I feel stress falling from me, but I also feel very very exausted. And all the fear is still in my brain...
But I have to learn taht, whatever it is causing my pain. It seems that it is nothing from which I will die in the next years....But I felt very close to this during this week.

I really hope my neuro journey has come to an end...I have to look for some other reasons for my pain which of course is still there..

Thanks to all of you, who shared some thoughts with me, especially during this very hard week. Hope none of you have to go through this..It was the first time, a (young and maybe not so experienced) neuro in the ER suspected me to really have als ...and I hope it was the last one. It felt like a really big show down in the end.

I think I will stay apart from this forum now for a while...though not knowing forever....My special thanks to yuliasir !!!! and also Xina, buzznerd, nrwtwitcher and a lot of others who supported me.This is a grea forum!!
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Re: in hospital - suspected Als..

Postby Buzznerd123 on February 6th, 2015, 1:17 pm

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Last edited by Buzznerd123 on May 1st, 2016, 11:39 am, edited 1 time in total.
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Re: in hospital - suspected Als..

Postby Yuliasir on February 6th, 2015, 1:32 pm

so good to see that one of the best specialists had cleared you out of MS and ALS. Just keep this in mind and you would gradually be better.

also good to read that your neuro also considered your minute paresis as a result of osteopatic treatment.
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Re: in hospital - suspected Als..

Postby German2 on February 6th, 2015, 1:33 pm

Thank you Buzznerd, of course I will follow up all further options what causes my pain. I know it is not normal. And to be honest, before I got the suspected dx of als I already was away from the idea to have that. But if you see it on your folder as suspected dx of ER it is just shocking...Now I will check other things, also small fiber....
Last edited by German2 on February 6th, 2015, 4:38 pm, edited 1 time in total.
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Re: in hospital - suspected Als..

Postby German2 on February 6th, 2015, 2:16 pm

Dear Yuiasir,

yes....he is not an MND specialist but a very experienced neuro with best references...I do trust him somehow..But I cannot feel such a big relief to be honest. Maybe it is because the reason for my pain is still unknown. Maybe it is because some docs see atrophy others do not. Maybe it is because I see that my hands are changing, getting thinner and that they are painful....
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Re: in hospital - suspected Als..

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