How Long to get a DX

[vantec]

It has been 11 months since my first symptoms started. Most experts in the field of ALS, say that it takes about 1 year to get a diagnosed of ALS, from the time of your first symptoms. I'm interested in hearing from people that have ALS, how long did it take you to get a positive diagnosed of ALS?

Conrad

 

[tabney]

diagnosed

Hello Conrad,
It took two years from the onset of symptoms for me to receive my diagnosed. Most of that time was spent with general practitioners. It took three months once I connected with a neuro familiar with ALS. Toni

 

[liz]

I first saw a neurologist in 11/05 with symptoms only in my right hand. Some sort of MND suspected within one week at my first EMG, but not ALS because only my right hand was affected. Six months later, although my right hand was worse, symptoms had otherwise not spread. Four months after that, suddenly my left hand and right leg started showing weakness. A month or two later, new EMGs showed three limbs affected and ALS diagnoseded in 11/06. I attribute the one-year timeframe for diagnosis to the pace of the onset of symptoms.

Liz

 

[quadbliss]

In August of 1996 Jen and I were in Mendocino, CA celebrating our anniversary. We both got massages, and after I got mine, I noticed some of the muscles in my back were twitching. I first reported the twitching during a routine physical in January of 1997. My general practitioner referred me to a Neurologist who I saw in May. Because there was no muscle weakness at the time, he could only diagnose me with “benign fasciculations”.

In May of 1998 I noticed that my left hand was getting weak. After a couple months of procrastination, I returned to the Neurologist who told me he was fairly certain I had ALS. They did a couple of nerve function tests, an MRI of my brain, and they scanned for heavy metals. When we came back to hear the results of the tests, the Doctor confirmed the diagnosis, and sent us to an MDA ALS clinic in San Francisco for a second opinion. They agreed.

Mike

 

[Rhonda]

My first sign of symptons was in April 06 and I was diagnosed with ALS June of 06. My PCP sent me to a neuro. that had been trained at Emory ALS clinic and he knew what to look for and the tests to do. After he did some testing he decided to send me to Emory and let them do more testing where I wouldn't have to go through the same test over and over. The day I went to Emory was the day I was diagnosed with ALS. I had never heard of mnd until my first neuro said that was what he thought I had. I guess it was good to find out so quick. It was what I consider the worst day of my life. But now I am dealing with it one day at a time. My thoughts and prayers are with you. Take Care.
Rhonda

 

[zac111]

hey ronda who diagnosed you at emory

 

[Beebe]

Hi Conrad

Hi Conrad, My son-in-law Jack started having problems with fingers left hand and fasciculations early February 2006. Went to local Hospital , took a dozen tests sent him home with Carpal Tunnel and Arthritis. Went to University of Pennsylvania April 2006 spent 3days in hospital diagnosed at that time. Gave him 6months to 1year! We are still fighting! My Best to You, Beebe

 

[Da Boys]

My husband struggled with chest discomfort for about 6 months, putting symptoms down to heart difficulties (he had a heart attack 3 years earlier). An exploratory appointment with a cardiologist resulted in a referral to a neurologist due to fasciculations, and weakening left arm/hand.
The neurologist gave a unconfirmed diagnoses following the first appointment one month later. This was followed by muscular tests one week later and the diagnoses was confirmed.
This was in November 2006. Weakening as continued since then.

 

[ltr]

Mike - so that kind of blows the theory that the fasciculations come after the weakness, at least for some, right? See, so much about diagnosing this illness is inconsistent. It can drive a person crazy, so really the only diagnosis is time. Leslie

 

[Saubier]

Hi Conrad,

My ALS started with speech and swallowing in December. I went to an EMT; he said nothing wrong with my throat and it looks neurological. Went to a General Neuro, had some tests, and he referred me to the ALS Neuro, who confirmed diagnosed a week later. So the answer is one week if they know what they're doing.

Pappy

 

[vmd]

annmarie:

Is the weakness you report objective weakness that has been measured and tracked or is it just your sense that you are weak? Also, when you say you are declining, what are the other symptoms you experience that have been declining?

The more I read about the disorder, the more I realize that there is so much variability, that truly only time will tell. Unfortunately, meanwhile, one has to suffer during that period of time. Everyday I wonder when the next symptom will come.

 

[vmd]

I have not yet had my emg. Based on what I have been reading here, a clean emg does not exclude als, right? Also, an abnormal emg does not definitively identify als. So where does that leave us?

I ask about weakness because this symptom can be subjective. In my case, I could measure the weakness objectively because I lift weights. I noticed that I could no longer lift the same weight with my right arm during the bench press as I could before.

 

[Omar]

Hey Vmd,

I have also noticed before my diagnosis that I could no longer lift with my right arm same weights, at that time I have had already a weakness with my index finger and thumb.
and my left hand up till now is still strong.
I guess when they exclude any possible disease and check your symptoms they will conclude
ALS. It may take up to years to get a definitive diagnosis and sometimes simply months so it depends on your symptoms in general and the progression.

Omar

 

[vmd]

Omar:

That is the problem with this disease, the diagnosis. The diagnosis may take so long. In reading your profile, it states you are 27. You are unique in that ALS rarely hits before 50. How did they go about eliminating other disorders in your case? That is, what tests did you have? Considering your age, the neuros must have tested you extensively to eliminate other conditions, I assume.

In my case, I am still quite strong as I still lift heavy weights. However, my right side underperforms relative to my left. This is strange because of my righ hand dominance.

 

[Lorie]

Dx

My Brother Timothy stared having muscle cramps an twitching when he was 34, the Doctors had no clue what was going on. Three years ago at the age of 43 the Neuro suspected ALS, but only a positive diagnosis in March of 2005. They cannot accurately DX it until it gets to a certain point. Last june Timothy lost the use of his arms and hands. His neck droops on and off. He can still walk with baby steps. He can talk and eat. Everybodys symptoms and stages can be different.
Timothy also periphial neuropathy and had radiation on a brain tumor behind his sinuses last august. He is a tough one.

Stay Positive!

Lorie