Time to Diagnosis?

[Lkaibel]

I am wondering how long it took people here to get diagnosed, or for their PALS to be diagnosed. I have read the "average" in the U.S. is ten months.

If you count from when my husband went to a Doctor with the presenting symptom, it was about 11 weeks to diagnosis. If you count from when we first heard "it may be ALS', it was just about six weeks.

Our only bit of confusion was the "presenting symptom" was contributed to heavily by an actual injury to a nerve ( slight drop in left foot) . Next, the EMG that kicked the diagnostic process into high gear did show chronic and active denervation, but also showed some "very unusual features" (still not sure I understand that one). Otherwise, it seems we followed an usually straight line from neuromuscular specialist to Certified ALS Center and diagnosis.

I also notice many people saying things like "there were symptoms for a long time". Again, not our situation. Brian had some leg cramps a year ago while working to help a friend build multiple decks on her home. Pretty heavy work for a man in his mid sixties, so still not sure that was related. Otherwise he was 100% fine.

 

[KimT]

I noticed a twitching and cramping in my foot in Summer 2014. I didn't think much of it. I was already going to a neuro every three months for Meniere's Disease and on my next appointment which was late Summer, he asked me if my ankle had healed from the fall I had in late 2012. He also noted brisk reflexes and asked me if he could do an EMG. By then it was October 2014. After his EMG he recommended that I go to Mayo. They did testing in December of 2014. I got a second and third opinion because they could not say it was or was not ALS. By August, 2015, I had the diagnosis. So I would say 12 months and it would have probably been longer if I had not seen my local neuro for another problem. I NEVER connected my twisted ankle or my fall in 2013 to any type of weakness. I just thought it was my balance being off from the vestibular damage.

 

[affected]

It's going to be wildly variable for lots of reasons.

For us - from the time we went to our GP because of the slurred speech, to the neurologist diagnosis was 7 months. We were unofficially diagnosed by a speech pathologist 1 month before that.

We went through seeing GP, ENT, Dentist (had 2 teeth pulled over a couple of months), a 'natural healing' doctor (who did some laying on of hands that did nothing, but who after diagnosis told me the diagnosis was wrong), and a facio-maxilliary surgeon who did many tests and removed some bone from his jaw (it was an exostosis which began to rot. we now know that was because of all the loss of muscle in his mouth causing changes and it being rubbed all the time).

A friend of mine suggested a speechie and I got the appointment myself, and she got us to the MND clinic very quickly. For us it was a matter of seeing the right specialist as none of the previous people we had seen had a clue what was going on.

We had been through CT scans, MRI, ultrasound of arteries, numerous blood tests and a barrage of antibiotics and mucous thinning medications.

By the time Chris was diagnosed he was unable to work, his speech was very hard to understand, swallowing was a problem, emotional lability, his hands had no fine motor skills and his arms were weakening. I now know that he was a classic bulbar onset.

He had symptoms with speech and swallowing for over 6 months before we even went to a doctor for the first time as it did start very mildly and I guess we were just expecting him to get better. I certainly did not suspect in that first 6 months that he was going to die. He harboured fears in the few months before we finally went to a doctor that he had a brain tumour, but did not tell me until his brain MRI came back clear.

 

[soonerwife]

Cliff had his first symptoms in July '14 which was slurred speech. He went to a PCP in January '15 who checked him for stroke symptoms and sent us to an oral surgeon. Speech therapist in August '15 suggested a neurologist. Visited neurologist in Sept. '15 who ordered tests. EMG completed in Oct '15, probably ALS diagnosis. Dec '15 second opinion confirmed.

So, 1yr 3 mths

 

[azgirl]

5months. 5 long terrifying months after 56 years perfect health

 

[Ells]

Just under 3 months. ALS was brought up as the "elephant in the room" week 9.

I am limb onset.

 

[tripete]

For me it was nearly 2 years. I was then diagnosed 3 months after I was married.

 

[chally]

3 months//. Limb onset classic case if there is such a thing.

 

[WendyWooG]

9 months to initial diagnosis, 19 months to final diagnosis. Limb onset for me.
Wendy x

 

[Lkaibel]

I think that Brian's age/race/gender (all ALS classic higher risk groups) and our getting hooked up with one of the Certified Center MD's who had more of a "let's call this" mentality than many do got us a a Dx so "fast". I put that in quotations because it's all crazy slow in the context of a terminal condition. I still think a great thing will be when there is a definitive test for this beast. It is hard to explain how hellish the diagnostic process is to anyone who has not been there.

As I see people's stories I feel more blessed. Pete dealing with this so soon after getting married, and we had 8 years together and 6 married. I relate to Kim's story in that who who imagine something like a foot cramp and twitch would lead to THIS?! I still sit and think "REALLY?!" on Brian having trouble raising his toes after an injury and getting a terminal diagnosis three months latter.

A few things I notice are it seems in general like the limb onsets are diagnosed sooner, and that many PALS were in great/perfect health prior to diagnosis.

 

[Jhill]

My husband started with fasciculations in December, 2015.

Saw GP in January, 2016, who referred him to a neurologist. At this time he was also losing the grip in his right hand.

Neurologist appointment was March 2nd, the day before his 65th birthday. By this time, he was starting with drop foot & was having trouble gripping & writing. We were given the probable ALS diagnosis.

On April 1, 2016 we went to the Jefferson ALS clinic, where an EMG was done and the diagnosis was confirmed.

As of now, he has no control of any of his limbs and is on bi-pap 24/7.

Joan

 

[Statius@]

My time to diagnosis was either 2-3 years, 3 months, or 2 weeks, depending on when you start counting--or what you call a dx. I'd been seeking treatment for arthritis and stenosis of my lumbar spine, to which I was attributing symptoms like balance problems I'd been experiencing for a couple of years. I was assuming a decision about back surgery was in my future. Finally the back doctor said your stenosis won't cause the problems you have with balance and referred me to a neurologist. I figured great, maybe I can get this issue addressed now. The neurologist, whom I saw within a couple of weeks in August of last year, did a clinical exam and told me before I left the office that he thought I had ALS--boom. He didn't want to subject me to too many EMGs so referred me to Mayo. We had to wait until our return from a long trip to Italy to be seen there, but Mayo confirmed the diagnosis in November.

Since the arthritis symptoms were and are real, I can't really fault the system for missing the symptoms of ALS, which were secondary to my back and leg pain. Once the neurologist got involved the dx was instant, though he said he couldn't be sure. He claimed to have sent 30 suspected ALS cases to Mayo over his career, and had been wrong only once. Not reassuring.

Ed

 

[Duker52]

My speech began to slur in Aug 2015. Drop foot started in Oct 2015 and EMG that same month revealed it was some type of motor neuron disease. MRIs of the brain and neck revealed severe cervical stenosis so had surgery to correct it in early Feb 2016. When symptoms didn't clear up went to new neurologist in Apr who repeated the EMG and said it was ALS, but insisted I go to Johns Hopkins for second opinion. In May, neurologist confirmed it was familial ALS. So it was about 8 months from bulbar onset symptoms until confirmed diagnosis. Bill

 

[SKlocinski]

Tom went to the GP at Thanksgiving. They sent us to a neurologist who we saw in December and January. He said it was either ALS or CIDP. The GP and the neurologist both mentioned the possibility of ALS at the first visit. I felt that this neurologist believed it was ALS from the beginning but would not tell us that. That and the fact that at each visit he was at least an hour late for the appointment and that it was like pulling teeth to get any information out of him, along with a recommendation from a rheumatologist (who I also think believed it was ALS although she didn't say so) led us to MUSC where he was diagnosed in February. That was confirmed at the ALS clinic in April. I believe the speech therapist that Tom was sent to by the rheumatologist also thought it was ALS since they were astounded that we had not yet be referred to MUSC. So all in all he was diagnosed in about 3 months. He did wait, though, until he had lost a lot of weight and was having multiple issues before going to the doctor. As near as we can tell symptoms started about a year before he was diagnosed.

 

[Vincent]

I first noticed foot slap in July 2011. Having connections in the medical field, I was seen and tested very quickly. It was still August 2014 until I was officially diagnosed. That's a long wait when you know from working in rehabilitation what the signs point to.
Vincent