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pfd161

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11
Reason
CALS
Diagnosis
01/2019
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US
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ME
First off, thanks to everyone on these forums. I have been visiting a bit as I'm quite convinced my girlfriend of 10 years has developed this terrible disease.

A year ago today we were on our snowmobiles in northern Maine... it seems impossible that we are where we are right now.

Sharon is almost 50. Been healthy and active her entire life. Her family is healthy with her mom and dad are well into their 80's.

Her symptoms started in May/June. She had some falls, which has never happened, and has progressively deteriorated ever since. Her most significant symptom seems to be weakness and slurred speech. She is being worked up by a neurologist and so far everything has come back negative, including MRI brain and C-Spine, Lumbar Puncture, and a million lab tests.

Today, she has an MRI of her Thoracic Spine, and on January 11th she has a NCS scheduled. They have not scheduled an EMG yet.

She walks slowly, and talks slowly as she is embarrassed buy it all. Her balance is terrible. She fell at work last week with her foot getting caught in the rug and hit her head on a door jamb, breaking her glasses and causing a big hematoma on her head. She also fell on the ice a week ago...breaking her left ankle. She is casted and non-weight bearing for 4-6 weeks which i think is good as i'm not thinking going to work has been good for her.

I believe she has lost 20 lbs in the last 6 months. She cries daily. It leaves me feeling so helpless. also, she is having difficulty swallowing pills now.

Her neurologist seems to think it's some for of MS, he has not mentioned ALS to her but she knows that it's a possibility. We don't discuss that...I think it's best to wait until she is diagnosed .

I know my thoughts are rather scattered. I love this woman and want her to be well. I myself am a Respiratory Therapist and Paramedic so I think that gives me a "worst case scenario" view of things. I'm just lost here....

Does this sound like a typical presentation?

thanks for reading this...

Dennis
 

Nikki J

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From what you have said there is certainly cause for concern. There may be reasons in history or exam that things are heading in another direction but not from what you have said.

You know of course there until everything is ruled out and criteria are met on exam and emg it could be something else.

Since you are in the medical field I trust you have found her an excellent neurologist.

Let us know how things go
 

Bestfriends14

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Senior member
Joined
May 7, 2017
Messages
713
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
Hello Dennis,

Your girlfriend's symptoms definitely sound worrying. As you may know, and from what I believe, MS ca typically be spotted via an MRI. Since your girlfriend's have come back clean, it does raise some concerns. Is there any way she can push for an EMG?

As well, please take extra precaution from here on out to ensure she has no more falls. If it is ALS (and I am not saying it is), falls can exacerbate the disease and can make progression worse. It is almost a good thing that she cannot fully bear weight on her leg as this will give her time to not put herself in harms way until you have more answers.

Do keep us posted. I will be thinking of both of you until you come back with an update.

Take good care.
 

KarenNWendyn

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OR
When they do the nerve conduction studies on January 11, it seems like they should also be able to do the EMG. I would certainly push for that.

In any event, preventing further falls is paramount.

Meanwhile, spend time together doing things you enjoy. Maybe watching movies, listening to music, visiting friends....

We’re with you on this.
 

pfd161

Member
Joined
Dec 31, 2018
Messages
11
Reason
CALS
Diagnosis
01/2019
Country
US
State
ME
Thank you all... i will keep you guys updated. It's nice to have some support finally. God Bless.

Dennis
 

KimT

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Dennis,

I would urge you to strongly insist that an EMG is done at the same time as the nerve conduction study. Looking at both together, gives so much more information than looking at only one.

Is her neurologist a neuromuscular specialist? If not, that might be the reason she/he will not do the EMG.
 

pfd161

Member
Joined
Dec 31, 2018
Messages
11
Reason
CALS
Diagnosis
01/2019
Country
US
State
ME
Tomorrow is the testing. I thought it was just a ncs but the paperwork she got said emgs. So I think we should have answers tomorrow. The neurologist rescheduled it earlier so he could do the test himself. Praying!
 

Nikki J

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I am glad that they are doing the emg too. Sending both of you strength and positive energy
 

Bestfriends14

Forum Supporter
Senior member
Joined
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Messages
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CALS
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AB
I'll be thinking of you and your girlfriend and sending positivity your way. Please update when you get answers.

Hugs
 

Jlynn

Distinguished member
Joined
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Messages
386
Reason
Lost a loved one
Diagnosis
12/2015
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NH
I'll be thinking of you and your girl today and am hoping you get some answers. Sending you strength, hope and positivity!
 

pfd161

Member
Joined
Dec 31, 2018
Messages
11
Reason
CALS
Diagnosis
01/2019
Country
US
State
ME
Emg was abnormal. He referred her to mass general... Didn't outright tell her she has it but on her paperwork motor neuron disease is the diagnosis. Im lost.
 

Nikki J

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Reason
PALS
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I am so sorry. MGH is the best. They will take great care of you. I am sending you a pm. Look in the right upper corner under your user name
 

lgelb

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Very sorry, Dennis. We'll support you in every way we can. As an RT/EMT, obviously you are ahead of the curve.

Since you are describing a rapid progression, if MGH agrees that this is MND, you might use your time there to get the ball rolling on a feeding tube and wheelchair, and to ask about an rx for Nuedexta. Of course, Nikki knows the cast of characters and is advising you, so that will only help.

Best,
Laurie
 

Bestfriends14

Forum Supporter
Senior member
Joined
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Messages
713
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
I'm so very sorry, Dennis. Please, as Laurie advised, it's best to get things going in terms prepping for equiptment needs. With all that is going on emotion wise and with a million things running through your mind, if you need answers as to any questions, please ask.
 

Lkaibel

Forum Supporter
Very helpful member
Joined
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Messages
1,338
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
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Dennis, I’m so sorry about your girlfriend but I’m thinking she is very lucky to have you. My brother is an RT also as was my mom back in the day. Glad you have found us, always here to talk, vent, and share.
 
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