Old 01-10-2017, 02:45 PM #1 (permalink)
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Default update and maybe, just maybe misdiagnosed

Hi,
I post my update.
Thanks to everybody for the support!
As you know I was give a MND diagnosis last month.
So I make an apoinment for second opinion in my country. It was yesterday, they make a lot of test, today I received the results.

1. Brisk reflexes - overall, positive bilateral Hoffman, no babinski. Fasciculation seen in 2 muscles. A lot of postural tremor, muscle shakes with exertion.
2. Whole body muscle wasting - the docs noted wasting in shoulders, hands, legs, calves, forearms and neck. Wasted tongue - both lateral sides are wasted but center is strong and some fasciculation are noted. Wasted but strong tongue -thue enigma...Also can move it really fast.
3. Emg findings:
no fibrillation potentials except in thumb muscle but the doc told my it can be end plate fibrilations - they were not rythmic.
all muscles have pollyphasic mups, some have high amp mups, but no one have long duration...

the strange thing - my tongue has most wasting bilateral. They checked left and wright side. Did not found fibrilations because i can`t relax it but all the mups are low amplitude, short duration and pollyphasic.
All muscle have full inteference pattern
The docs told me this can be seen in myopathy. They pressed the sides of tongue and there was pain only by light force .
So for now they excluded MND, told me I`m so complicated that they will make a documented case study for me.
I feel like lab mouse....

Now they will try to exclude myopathy - pollymyositis or dermatomyositis( because most wasting is in proximal muscles), some dystrophy and vasculitis. They even suspect CIDP because of the pain in tongue. Still waiting for Kennedy DNA test..
SO again square one..... I have done this tests before but they want to make the again.

I was a little better while on prednisolone so one of them suspect something autoimune( the blood markers were negative)

Thank you for support I will continue and will find the reason and I will write.
The good thing is no MND dx by now, the bad - i`m going weaker and progressing worse....And the dx of ALS is when there is nothings left - the didn`t find anything by now...
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KimT (01-10-2017)
Old 01-21-2017, 04:20 PM #2 (permalink)
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Default joint pain and body shaking

Hi to all...
I have some questions...
I have recieved 99% sure dx of MND. Unnamed because is very strange..
still waiting for kennedy test
I want to know something - is it possible to have whole body symetrical muscle atrophy??
My whole body is getting weaker( yes now I`m weaker) and I have marked atrophy in hands, quads, shoulders, neck , pectrorals, butt and foots... It is all very symetric..
I read everywhere that in Als most cases are asymetrical but I`m loosing muscle mass everywhere.. I`m afraid that i will be paralyzed in one moment with all my muscles.. The muscles are hard to touch but wetting smaller and smaller..
The doc was very surprised when he saw me yesterday... Also my joints in fingers and Heels hurt me so much... Also bilateral...
Last Emg shows no denervation in muscle with very obviuos atrophy and chronic denervations in both legs...
Twitching is less prominent but is very interesting - bfore to loose muscle I feel them stiff and somekind numb and after that i loose muscle mass...
And last question- my whole body and muscles are shaking when i move them or get slightest exertion... like whole body clonus.. it is everywhere. The doc dont know how to fix it...`
Did you have such problems

Thanks
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Old 01-21-2017, 05:12 PM #3 (permalink)
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Default Re: joint pain and body shaking

Corwin, I've never heard of anything like that. Remember that ALS attacks the nerves in the brain in order, not all at once. Really think you're still looking at some other disease, not ALS.
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affected (01-22-2017)
Old 01-21-2017, 06:07 PM #4 (permalink)
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Default Re: joint pain and body shaking

Atsugi, I hope also, but with wasted fasciculating tongue 1/2 from starting size.... and a big swalowing troubles also....
The odds for something else are very very slim ( my neuro doc words..)
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Old 02-03-2017, 06:08 AM #5 (permalink)
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Default Re: update and maybe, just maybe misdiagnosed

Hi, and greetings to all.

I have an appointment again in Istanbul with the Chief ALS community specialist. It will be in 13.02 and I will be in the clinik for 5 days.
They will make test, spinal tab ( which was not done till now) and EMS and TCS

Because I din`t meet really good mnd specialist I think this is a step in right direction to receive a deff. answer of my problem.

Meanwhile things are getting very very strange.

1st I have no doubt I have some kind of MND BUT:

last 3 months were very fast in the progression - it is the time that I stopped Prednisolone - I was taking 40mg and the progression rate was very slow.

Now I have absolutelly symmetric muscle loss in shoulders and very very much less muscle in my hands. The interossei muscles are almost gone, the thumb muscle is gone and the small muscle under the pinky is gone. This is in symetrical pattern and the muscle loss in equal...

I have heard and read about asymmetrical loss in als, even split hand syndrome but my muscle loss is equal.... Now hands are very hot and I feel buzzing sensation and some king of tingling there...

Second strange - tongue is wasting also symetrically but NO wasting in the central muscle - everything that is gone is from lateral size. Where is the atrophy I feel dull pain, also tingling and burning pain. The tissue is somewhat different in colour there and is I press the tissue I feel pain.
The central tongue muscle is working just fine - I have no pain there, tongue is strong, fast , quick - yesterday I make some test - no problem moving it side to side ( I make 350 times this for 1 minute) I can hold my tongue stretched outside the mouth for 2 minutes, push hard my cheek, touch molars, blow lips, whistle very very strong and althout speech is compromised it is still clear and laud......
So whathever is this it is affecting only the sides muscles in tongue. My tongue start twitcing after I redused the prednisone, but it is occasional ( which I hear is not the case in ALS) ALs it is very very small now - 1/2 of his first size

My heel are killing me from pain, my knees are in pain, both pinkies and both thums....

Whatever Have I is very very symmetrical - also strange in ALS - I`m not loosing weight - not even a gram, and swallowing is difficult but stays what was 1 year beffore...

Also left eye feel heavy

Another strange thing is that I have tingling and numbness all over my body and shock like sensation in all limbs occasionally. Muscles are jerking, reflex are brisk. I heel sometimes like somebody is putting a needle in my fingers.

I have clonus in both legs when sitting in toilet and make heels up, but I have this from my childhood - so maybe my hypperleflexia was natural - I don`t know....

I am loosing muscle in hands but I still have fine muscle skills, can make everything what I have done before, My grip power is 110 libres in both hands. Maybe the have become a little bit weaker but DEFFINITELY this is not corresponding with the actual muscle atrophy( they are so skynny now..)
Also I can make 2 push ups on my fingers which in my point of view is not lack of muscle power.

I almost cannot chew before from muscle in jaw getting stiffed and like balls and tired very very quick - now there are just fine. I can chew 10 chewing gum together for 1 hour....

1 year ago I cannot breath, now breathing is fine.....


The worst is that I have a memory problems and brain fog - MRI of head was fine.
Very interesting case -1% from me hopes that it can be benign but... 99% is more....

So wish me luck and I hope I can received a dx with something is curable ( I suspect Vasculitis or MADSAM CIDP os whatever is...)

Last edited by corwin : 02-03-2017 at 06:16 AM
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Old 02-03-2017, 12:14 PM #6 (permalink)
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Default Re: update and maybe, just maybe misdiagnosed

Good luck with your upcoming appointment. It sounds like you're moving in the right direction. It's too late to tell you to not go on Google to try to fit your symptoms into one rare disease or another and diagnose yourself. I understand the desire to do so, however.

There are so many different kinds of things that ca cause particular symptoms. A doctor once said to me that it's never any one symptom that creates a diagnosis and that neuros rely heavily on pattern recognition. It sounds like you are exhibiting a different pattern of symptoms than ALS, but still must be very worrying for you. 5 days in a clinic with an ALS specialist will hopefully provide you with more answers.
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