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in hospital - suspected Als..

PostPosted: February 1st, 2015, 3:39 pm
by German2
Hi there ,
Maybe some of you know my older posts...more than twitches
Two years of symptoms 19 month of twitches.
i went to the ER because of paralysis lasting a few minutes. They kept me here...
then i saw the suspected dx: als...can you imagine that this is one of my hardest days...
I have pai there were the paralysis was...since a longer time. Shin splints.
please keep yor fingers crossed. I do 't want to bd the next one...

Re: in hospital - suspected Als..

PostPosted: February 2nd, 2015, 1:22 am
by Yuliasir
Please keep calm. Our fellow mrjuanperalta also had ALS in his official list of suspected diagnoses, but for him his present diagnosis seem ot be neuropathy. not ALS.

Re: in hospital - suspected Als..

PostPosted: February 2nd, 2015, 2:49 am
by German2
Dear yuliasir,
In a way i have resigned now...i know that something is goin on. But what...i know that they do very thorough emg here...but it is the same hospital where i was suspected vasculities 2 years ago , was sent to psychiatry last year because it would be all in my brain (swallowing issues, sore throat, numb feeling in left arm) and now suspected to ha ve als. my life will never be the same anyway....I am reading actually the healing codes. This book tslls about sponta uous healing of mnd case...i am not bieving too much in those things but reading of this book itself brings a little hope. Never before a neuro suspected me to have als. my reflex test was ok apart from the left arm ( which could be due to sulcus ulnar syndrom)...i asked whether it could be MS. The doctor told me (a very young rumaenian lady) that MS is not going with pain...but i thought the same about als....i have neuropathic pain...

Re: in hospital - suspected Als..

PostPosted: February 3rd, 2015, 7:25 am
by German2
I spent a full day here in hospital without any doctor in sight. Just one newbee doc arrived to make some notes about my problems..it was a hard day. Then the chief neuro with 36 years of experience came today to make the Als test. As he named it. The full clincal prgramm as you know it. We talked about my paralysis which lasted a few minutes. He saied that he has an idea but will do further testings during this week. He said it is neither Als nor MS. But something else....it was ahard day and two hard nights waiting on that first statement...
it is a great relief for me to get that statement after my first foot drop in my life...my personal hell.

Re: in hospital - suspected Als..

PostPosted: February 3rd, 2015, 7:53 am
by Yuliasir
good to hear that experiencd doctor says it is not ALS neither MS.

Re: in hospital - suspected Als..

PostPosted: February 3rd, 2015, 8:51 am
by German2
Yes. On one hand absolutely!! On the other my situation gets worse. No sitting somewhere without something goes numb. And is a very special experience to run around with a folder labelled with...dd "Als/Ms? And to be introduced to new nurses as...here because of suspected Als...this is some kind of confronting therapy. My bed neighbor she has bone cancer in second stadium tryi ng to get some more 15 years to raise her kids. I am getting so humble about life..it is a very odd experience. High end...and it is clear to everyone that i have a desease which is still to be found. I am sorry to sa that i still feel awful. Not knowing what come next. There is one point where i just want to know what's going on...

Re: in hospital - suspected Als..

PostPosted: February 3rd, 2015, 9:29 am
by German2
By the way...I saw in my document folder that my ASR was negative...so this could be a sign of a pnp to my knowledge...but nust speculation..

Re: in hospital - suspected Als..

PostPosted: February 3rd, 2015, 10:34 am
by trustme78
I was very sorry to read this initial dx although I was sure that you would be cleared at one point. The way you were and are treated by the doctors and nurses takes my breath away and makes me incredibly angry.

I hope everything works out for you.

All the best!
Volkmar

Re: in hospital - suspected Als..

PostPosted: February 3rd, 2015, 2:11 pm
by Buzznerd123
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Re: in hospital - suspected Als..

PostPosted: February 4th, 2015, 6:25 am
by German2
The doctor in chief visited me shortly today....i thought the worst would be ex cluded but when leavin the room he said that there are some awful deseases mentioned on first page and he at first has to deny...with further investgations. But no emg is a is pla ned by the way. So i am again in alarm modus..it is like the horror ne er ends...ho can i hang in if doctor does not? But he told me that nothing showed up in the clinical nor in eeg...

Re: in hospital - suspected Als..

PostPosted: February 4th, 2015, 7:23 am
by Yuliasir
Seems like he is not hesitating but just explains the ways how differential diagnosis is going on: first, you have to exclude 'awful diagnoses'. Normally to exclude not ALS itself but "suspected ALS" a series of EMG and clinicals should be assigned as there is no other ways to suspect or confirm ALS. Then probably MS would be the next in the list - this needs MRI (usually several of them), lumbar tap etc.
I think it would be better if you could ask him what is the scheme for exclusion of diseases so you could see the whole plan. This should definitely decrease your anxiety. If they did not assign amy EMGs, probably ALS is not in their plans at all.

Re: in hospital - suspected Als..

PostPosted: February 4th, 2015, 7:47 am
by German2
As i cold see an NCV, sep and ssep, mep are planned. Emg was not marked yet. He had not much time. It is full house hrre a d i am i the breast cancer dept. So not on the neuro display

Re: in hospital - suspected Als..

PostPosted: February 4th, 2015, 7:56 am
by Yuliasir
looks like general plan for MND exclusion, so do not worry. Theay will look for possible "silent lesions" and for neuroconduction itself becasue your current symptom was interruption of neurocondcution.

Re: in hospital - suspected Als..

PostPosted: February 4th, 2015, 8:13 am
by German2
Thanks yuliasir..what is a silent lesion? Is it sth mnd related or are other deseases still possible? I think all will be done tomorrow. I am playing the waiting game. I am terrified..all this has been done five month ago. Legs fou month ago. I mean i k ow there is s.th wro g. Can it still be something else? Be did not mention any missing reflex es y the way. Thjs points away from pnp..if my ndrve conduction is not worki g propperly and interruptions appear.. what are my perspectives....? A day by day living with mnd exclusion for the moment? ...dooms day..

Re: in hospital - suspected Als..

PostPosted: February 4th, 2015, 9:24 am
by leaflea
Hi German2, my thoughts are with you halfway across the world. What Yuliasir is saying I do NOT think refers to any nmd. Has anyone mentioned a conversion disorder? These are generally harmless and transient, usually a full recovery in a few weeks or months. It looks like as Buzznerd mentions, there may be many many other more likely causes. It seems NMD has been ruled out a few times over the months or years thought it is hard to put it in the past when each new medical provider places it back into the initial differential. All the Best.