How long does it take?

[autumnrain]

My symptoms started May 2013 with low back pain,shortness of breath, excess saliva and right limb weakness. I have had three emgs which were six months apart and all of them were abnormal but inconclusive. I am getting weaker and its little frustrating to be in diagnostic limbo. My doctor thinks it is probably ALS as he has ruled out medical conditions that can mimic ALS. Some of my symptoms waxes and wanes and in a strange way it gives me hope I have my next appointment in June and hoping to find some answers. I really appreciate this forum and wanted to share my situation with you all.

 

[Vincent]

I was over 2 years being diagnosed. If there is any lesson in all this it's patience.
Vincent

 

[Mtzu]

This disease is so variable and that's one of the things that makes it so hard. I've heard of diagnosis time frames that vary quite a bit. Vincent said 2 years and I was diagnosed in 6 months. Vincent is right, patience seems to be the key for most very part of this process.

Yes, please keep sharing. We all learn from each other.

Michael

 

[cheerleader]

Took mine almost 2 years!

 

[davbo49]

some of us may not know that they have been dealing with als way before getting diagnosed. there were things going on with me way before the dr's told me it was apart of it.

 

[autumnrain]

Vincent and Micheal thank you so much for these awesome words of wisdom! Life is messy but I am a chronic optimist! Cheerleader... what were your symptoms and did your emgs show any abnormality ? I exhibit some clear Upper motor neuron dysfunction and that's why my neurologist think its probably ALS. My last emg performed in December 2014 was inconclusive.

 

[cheerleader]

Autumn, my hubby was the one with ALS- his was bulbar, so originally we were seeing Ear, Nose, Throat doctors until FINALLy a specialist at Johns Hopkins referred us to a neurologist. Yes, the EMG immediately gave him a diagnosis of ALS, but we were advised to go to Mayo for a second opinion. Think most doctors recommend a second opinion . Good luck to you.

 

[Nikki J]

Waiting can be tough for sure. I hope you are seeing a neuromuscular specialist ?

 

[chally]

waiting and unsure are hard on a person. try to stay positive because either way you will need a positive attitude. take a breath. keep posting. chally

 

[Green Queen]

Hi autumn, diagnosis can take waaaay too long. I'm fortunate to be seeing a world expert in MND with regards to my diagnosis. He is part of a research team and one thing they are aiming to improve is to shorten the length of time from onset to diagnosis.
I know I don't have ALS, pretty sure a rare form of PLS.
Every time I have a test and get results or one doctor contacts another, I'm very curious to know what's happening, what their thoughts are...
I did learn yesterday however, what you get told can't be untold, you can't unread what you've read.
To say to you what others here have said to me...once you have that diagnosis, it won't be undone.
I say good on you, cling to the hope that the inconclusiveness of the EMGS may lead you elsewhere.
Chally is right, a positive attitude will be needed whatever happens, and you are in my prayers for your next appointment.
Please do keep us updated.
God bless, Janelle x

 

[autumnrain]

Cheerleader.. Sending you a hug and I am sorry for your loss. I am considering a second opinion after my next appointment with my neuro. Nikki yes I am seeing a neuro muscular specialist with decades of experience.

 

[autumnrain]

Chally and Janelle.. thanks for your support and encouragement ! We all need a positive attitude and I am hoping and praying! You guys are the best and all your posts gives me a sense of comfort and calmness.Thanks again for your thoughtfulness, its greatly appreciated !