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Cherise77

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My family and I have been feeling so desperate and confused the past two weeks. My Dad went to doctor initially with weakness in right hand and some muscle wasting in arm (which we thought was from him favouring his left arm for the past year). Doctor sent him to neurologist and during the month waiting for appt he began having twitching in the same arm.
Neurologist performed a nerve conduction test and EMG on both arms. Left arm normal and the right has moderate prolonged latency and no conduction block. Only LMN affected as well.
MRI showed no nerve compression or damage only some minor disc bulges.
Blood work showed elevated CK enzyme and vit D deficiency. We’re still waiting for results of the G1-antibody (praying that it is elevated).
This waiting period of only really 10 days so far is awful! And I feel bad saying that because I know most people have been waiting for months sometimes years for a diagnosis. My Dad is feeling and noticing everything now and believes he’s having twitches everywhere and numbness and cramps in legs. We keep telling him a lot of this is probably due to anxiety being that it’s been a year of the same symptoms and would be strange if it was now happening everywhere in only a matter of days.
My question is has anyone else been diagnosed with MMN without a conduction block?
As well as can you be diagnosed with MND having only symptoms in one arm after a year?

Thank you for your time reading this. Trying to find some positive experiences to share with my Dad and lift his spirits.
 

IgorZilio

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Hello Cherise,

EMG changes in MMN: (https://emedicine.medscape.com/article/1174021-workup#c6)
"When MMN is defined clinically, some patients may not have demonstrable conduction block on conventional NCS.
NCS of motor nerves shows multifocal conduction block. Other signs of demyelination may be present, including decreased velocities, prolonged terminal latencies, temporal dispersion, and delayed (or absent) F waves. Testing of multiple segments in several nerves may be required to demonstrate conduction block, and spinal root needle stimulation may be helpful to demonstrate proximal conduction block. Unlike ALS, needle EMG in MMN does not reveal the presence of widespread fibrillations, even though fasciculations and myokymia may be observed. Recruitment may be decreased as a result of conduction block, without significant changes in motor unit potential morphology."


Seems like your father showed some sign of demyelination with prolonged latencies. But the EMG was done only on his arm? A more thorough exam might be more useful.

CK is also usually elevated ("CK is frequently elevated (< 3 times the upper limit of reference range)." Things are really pointing away from MND. Do you have facebook? There's a MMN group where I'm sure you'll be able to find more information and diagnostic information. https://www.facebook.com/groups/570233766320713/

MND diagnosis depends on the EMG and the clinical examination. There are many diseases involved, like fail arm syndrome. But the EMG points away from MND, no fibrillations/altered motor unit morphology, that's a constant with any MND involving LMN dysfunction. In ALS you have 'degrees' of diagnostic certainty: (https://emedicine.medscape.com/article/1170097-overview)
"Clinically definite ALS: UMN and LMN signs in at least 3 body segments
Clinically probable ALS: UMN and LMN signs in at least 2 body segments with some UMN signs in a segment above the LMN signs
Clinically probable, laboratory-supported ALS: UMN and LMN signs in 1 segment or UMN signs in 1 region coupled with LMN signs by electromyography (EMG) in at least 2 limbs
Clinically possible ALS: UMN and LMN signs in 1 body segment, UMN signs alone in at least 2 segments, or LMN signs in segments above UMN signs
Clinically suspected ALS: Pure LMN syndrome with other causes of LMN disease adequately excluded
"

At most, from what you say, without any possible UMN involvement, you fall into the 'suspected' ALS. But again, EMG points away from any type of MND.

Hope everything works out!
 

Cherise77

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He goes to a more specialized neurologist tomorrow afternoon. So we’re praying that she has some more answers and that she points him in the MMN direction.
If anyone has advice or a similar symptom progression please share. It would be very helpful! Thank you.
 

Nikki J

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I can not view Igor’s FB link. Hope others can. There is a good MMN group. There is also an MMN forum though maybe not too active

The criteria in the medscape article ( although recently written) are outdated I have seen the old ones elsewhere too I think on an ALSA site. The category of suspicious has been removed and I think there are other changes. If I can find current criteria I will post.

Cherise read the important post near the top of this subforum on getting a diagnosis to help prepare for your appointment.

To answer your original questions yes and yes. MMN without conduction block happens and ALS can progress very slowly so remain in one limb for a long time.

Good luck tomorrow
 

ShiftKicker

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Cherise, good luck at the appointment tomorrow. I am not sure who your dad might be seeing, but my hopes are it's Dr Briemberg or one of her associates at VGH/UBC Neuromuscular clinic (or at GF Strong).
 

Cherise77

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Thank you for all your insight! So helpful and much appreciated :) i’ll look for that Facebook group and yes the EMG was only done on his arms as he is only having symptoms on the right arm.
Sorry I probably didn’t add enough detail from the EGM. Here is what is says for fibrillations.

“EMG of the right first dorsal interosseous showed mild fibrillations and positive sharp waves, along with decreased recruitment of motor unit potentials.

EMG of the right flexor pollicis longus showed no fibrillations or positive sharp waves, but with increased amplitude and duration of motor unit potentials which had a reduced recruitment.

EMG of the right biceps showed no fibrillations or positive sharp waves, but with increased amplitude and duration of motor unit potentials which had a reduced recruitment. There were extensive fasciculations.

EMG of the right triceps showed no fibrillations or positive sharp waves, but with increased amplitude of motor unit potentials which had a reduced recruitment. There were extensive fasciculations.”
Hoping this is still not pointing in the MND direction?

My Dad is seeing Dr.Gillian Gibson. Have you heard of her? Thanks!
 

IgorZilio

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Mod note: click on the hyperlink that says Facebook Pages, not the white box. The FB group link, hope this time it works: http://www.facebook.com/groups/570233766320713/

If not, search for MMN on FB, it's the first group - a starry sky as cover.

The criteria are indeed outdated. The newest and the one used to give me a diagnosis was the Awaji criteria. Basically, now fascics, in the presence of other abnormalities - like altered motor unit potentials are considered a sign of acute denervation.
 
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Cherise77

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We got the terrible news today that my Dad has ALS. I’m still in shock, crying on and off and researching as much as I can about drug trials and success stories.
I feel helpless as I don’t know what I can do to help my Dad. Can anyone offer advice on what I can possibly say or do for him? Also any opinion on stem cell trials?
Thank you.
 

NinaP

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Keep strong. I dont know what else to say. Its a living tragedy.
 

lgelb

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Cherise, I'm very sorry. Give yourself, him and your family/friends time to process. There are many threads here with ideas for things to say and do. Check clinicaltrials.gov for the stem cell trials that are recruiting.

Best,
Laurie
 

ShiftKicker

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Cherise- I am so sorry to hear this news. It must be very overwhelming news for your dad and you family.

I am not familiar with Dr Gibson. If your dad is going to GF Strong ALS clinic, they do keep abreast of research, trials and studies there and can connect you.
 

IgorZilio

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So very sorry Cherise. As someone newly diagnosed I can understand the plethora of emotions you must be going through. My mom was diagnosed about 30 years ago with Systemic Sclerosis - a rare type of rheumatism. She's lost the vision in one of her eyes to it and a lot of other things. Despite her limitations over the years she's one of the strongest and incredible people I had the pleasure to meet. Went on to be municipal secretary of health and councilwoman. Right after my diagnosis when I was sobbing uncontrollably she said to me "Igor, you have no idea how many times I've heard 'You have about 2 years left to live' from my doctors and had to come back home and face you still as a child, still as an adolescent and not know if I would be able to see you become your true self. Each person is unique, so are the diseases that affect them." ALS is completely unpredictable and I've met many people at the clinic I went to, 7, 8, 10 years with the disease and still very much functional. For as hard it might seem now - don't give up on hope!
 
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Cherise77

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Thank you so much Igor! Your words really gave me some hope today. You and your Mom are inspirational! I’m trying to stay positive for my Dad and family. We’ll take each day at a time and pray for the best possible outlook.
 

Clearwater AL

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Igor, just a suggestion. Many members here struggle just to read.

Maybe you could break your replies into two, three or four sentence paragraphs.

People often "skim read" posts that are a brick of text and often miss valuable
details.

Again, just a suggestion. :)
 
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