It is starting

[Nikki J]

I did not want to put this in DIHALS nor does it belong in newly diagnosed so here it sits. I do not need opinion or information but support and prayers.

My story for those who do not know it. FALS family gene positive. Recent leg weakness Followed by twitching. Neuro exam borderline normal. Today EMG abnormal with all the criteria for ALS in one muscle abnormal but not rising to the level of the first in the adjoining muscle. Because it is only localized they will not call it yet. If it weren't for the FALS it would not be as serious but I am supposed to now find a neuro ( this was study neuro) and start the process

Pray for me

 

[AfraidButNotAlone]

God bless Nikki.

 

[MaxEidswick]

>but I am supposed to now find a neuro

Scary Nikki. Try to find a reputable ALS clinic or a Neuro that studied under an ALS team (that was how we were directed to Appel's clinic in Houston).

Our thoughts are with you.

Max

 

[skipper66]

I will definitely pray for you. I have God on my speed dial. Hugs, Kim

 

[affected]

Nikki, you are an amazing woman, living with the fals knowledge, being active in trials, and on this forum, always knowing you could one day feel these first symptoms. And yet your light has always shone so bright for everyone to see.

I have you held in my thoughts with much love.

 

[Nikki J]

Thanks guys. Max i will go to MGH. I will call tomorrow.
I was a little worried but did not expect it. She dictated her findings as she went along and she started in the area she expected to find something so I knew right away before she directly told me.

 

[bigmark1954]

>but I am supposed to now find a neuro

Scary Nikki. Try to find a reputable ALS clinic or a Neuro that studied under an ALS team (that was how we were directed to Appel's clinic in Houston).

Our thoughts are with you.

Max

Great advice, my experience was with a clinical neurologist at first...he even did an EMG test on me, and said it was clean. A month later he referred me to the ALS clinic. The doc retested and found both UMN and LMN positive tests. He actually told me on the first exam that I had ALS, just from talking to me and an intensive exam.
The moral of the story is.....don't go to a "Jiffy Lube" to get a transmission overhaul! I highly doubt that I progressed to a dirty upper and lower EMG in 3-4 weeks time.

 

[Nikki J]

Thank you again all. To be clear the doctors I have seen this week are ALS specialists. The doctor who did the EMG is the head of the EMG division. I have no doubts about their findings but they are research doctors and can't follow me or prescribe for me and I don't live here anyway was here for the study. That is why I need a new neurologist.

 

[Barbie]

Nikki, how scary for you! I can only imagine how you are feeling right now.

be strong girl

 

[Jeff Long]

I did not want to put this in DIHALS nor does it belong in newly diagnosed so here it sits. I do not need opinion or information but support and prayers.

Prayer and support we can give!

Pray for me

Constantly. Keep us posted.

Jeff

 

[CGARS]

If knowledge is power, then you are She-Ra!
Princess of power!

Our thoughts are with you.

 

[Santa joe]

You're in my thoughts and prayers.

Debbie

 

[monster]

I'm so sorry to hear that. My thoughts and prayers are with you!

 

[affected]

You have given so much support to so many Nikki.

Now we can support you back. {{{hugs}}}

 

[celticgirl]

Nikki you are,and have been a good friend to many on this forum. Know that we are all here for you.You always have good advice and are always supportive to all, you are in my thoughts,love and hugs, Anne