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Distinguished member
Aug 16, 2007
Ive have read a few CALs and PALs on here say they then realized on diagnosis that they'd actually had symptoms for a few years prior to that. I am confused by that. While I'm still awaiting diagnosis, my symptoms are not something I could have ignored (and its been going on for 18mths). So what ALS symptoms could you possibly have that you just live with and assume are normal/nothing to be concerned about? I understand the fasiculations thing because you might have been told BFS or something but weakness, atrophy, tripping, dropping things etc?
If you think about it, it also means that the 2-5yr thing is misleading for many many people because if you have had symptoms for say 3yrs (as one PAL said the other day), then your life expectancy with ALS is nearer 8-10yrs not 2-5. Or do they typically say that you have 2-5yrs post diagnosis?
Sorry, double posting.

To answer your last question first, my own experience and reading that of others over the years, lead me to believe that the longer you have with symptom pre-diagnosis, the longer you will have post-diagnosis. In my own case I spent 6 years after symptom onset making the rounds of neurologists before getting my ALS diagnosis. My diagnosis came seven years ago and I'm still here.
Wow! That is just amazing

On the one hand John, it gives hope to anyone that you are here 13yrs after onset of symptoms, on the other hand, for those of us going through the tests, it is scary to think that we will eventually end up with the diagnosis we fear.
But your story is amazing. Do you mind my asking how are you doing now? Are you paralyzed? Peg? Vent? And if you went 6yrs prior to diagnosis, what were your early symptoms?
I have had my neuro tell me that if after 18mths he cannot say for sure that it is ALS, that it may not be at all. But your story - and Pats - would certainly suggest differently.
Thanks for reply. I appreciate it.
I had weakness and cramps for about 2 years before diagnosed. Fascics came on about 11-12 months before diagnosed. Blamed weakness on quad by-pass in mid 99.
Hi Mama,

My early symptoms were speech difficulties which then advanced over a couple of years to include swallowing difficulties. By the time I got my diagnosis I also was having leg weakness. For a while I was considered to have myesthenia gravis, a treatable disorder but I failed to respond to treatment and symptoms continued to progress. I passed, sort of, an early EMG but later tests showed more problems. Oddly my swallowing problems are little worse than they were 10 years ago but other symptoms continue to advance inexorably particularly in the limbs. It hasn't helped my piano playing a bit:?. I have used a scooter for mobility for nearly 3 years. I can walk maybe 100' with a walker. Speech is variable from fairly clear to obscure and weak. My breathing is compromised but I've not sought any intervention yet. I commute to work and drive using a ramp-equipped van with hand controls.
John - do you mind my asking how old you are? I read on one blog from a guy with ALS that progression tends to be slower the younger you are. I don't know that this holds true for everyone and there must be exceptions (remember Chad Bowman) but I wonder if generally, you advance more slowly if you are younger. Your progression certainly seems to be slow.
I also heard that Leo Greene had speech problems for 3yrs before he had a diagnosis.
And yet, they say that bulbar issues are the ones that advance fastest. All very confusing.
Mama, I started experiencing problems at least 2 yrs before I went to the Dr. The first thing I noticed was not having the strength in my arm to pull my bow back like I did have. Then later on I noticed I didn't have the pinch grip between my index finger and my thumb. My hands got progressively worse the following year with me losing muscle tone in them, thats when I went to the Dr. Eventually I started having difficulty with my walking, but I never had any and still don't have a foot drop. Its been over 4 yrs now and I can still walk, though not real far, and I have balance problems. The only problems I have at this point and time are my hands and legs, I still have arm strength to pull myself up from a sitting position. May God's blessings be upon you Mamma.
When my husband was diagnosed, he realized that he had cramps 2 years prior, and had weakness in his hands. I noticed tripping and falling over 6 months prior to the diagnosis. When he had a few drinks, it exaggerated things as well, he really slurred his speech, and had trouble holding himself up, and that was 1 year before the diagnosis. We all thought that he just couldn't hold his liquor...

John - do you mind my asking how old you are? ...And yet, they say that bulbar issues are the ones that advance fastest. All very confusing.
I was 48 when I had my first symptom. I remember the day clearly. I tripped over the word "lily" and I had never had any pronounciation problems in my life.

And yes, I've also been puzzled by the consensus that bulbar symptoms advance more quickly.
Mama - even with my diagnosed I can now think back to symptoms I had that I thought were nothing. I had a constant, what I thought, was the worst tennis elbow known to man. I had to use Ben-Gay and a tennis elbow splint to make it through the day. I couldn't write and had to use a recorder in my classes. I also remember walking up the inclines to classes my legs felt like they were going to give out and cramped. I thought it was due to deconditioning. So, I guess many of the neuromuscular diseases can be traced back.

Like you, I try to calculate life expectancy times, progression rates, etc. The advice we get from doctors is based on averages or most common scenarios. In statistics, we talk about the mean of a distribution and the variability around that mean. Doctors can only give us an estimate, and their estimate is probably some measure of central tendency. The stories we read on these boards represent the variability in ALS.

I also have read that the prognosis for bulbar onset ALS is poorer when compared to limb onset. Patricia, on these boards has also been living with bulbar symptoms for years. Perhaps, there is a difference with those that are truly bulbar onset and those who develop bulbar symptoms later, but are technically limb onset?
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 fasciculation” (twitching for no apparent reason).

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. There are no tests to confirm ALS. All they can do are a few procedures to rule out other causes for the symptoms. 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.
(Excerpt from my website)

That is the thing with this that is so crappy frankly. I mean you go to the doc and you get told "no, not ALS, just some benign twitching" - and then lo and behold 2yrs later, he turns around and says "oops".

Just not fair.

I mean can you imagine if went to the doc and they said, "nope, you do not have cancer " and then 2yrs later the doc does a u turn on you. Yet in the world of ALS/MNDs , it isn't that unusual. Time and time again you read of misdiagnosis and then finally an ALS diagnosis. Or worse still the old anxiety diagnosis to then be told "yes, there is something wrong".

Where else would this happen? It is a strange disorder indeed. Takes forever to manifest sufficient for diagnosis and that is just so stressful.
symptoms before diagnosis

I was recently diagnosed but can trace my symptoms back almost four years ago. The confusing issue is that I also have a variety of arthritis related problems which led to a very necessary lumbar fusion two years ago. I was told that the weakness in my left leg was due to severe spinal stenosis. I had a lot of back pain (now gone) but after the surgery, my leg became weaker, I developed drop foot in both feet and the weakness spread to my right leg and then my arms. The spine specialist kept telling me it was all due to my "nasty" spine. Finally someone thought to do an EMG and he sent me to the first of two neurologists. The first was pretty sure of the diagnosis after all of the numerous tests but sent me to an ALS specialist who made the official diagnosis. The symptoms I have are only limb symptoms, no bulbar yet, but I am wheelchairbound and am losing my hands. Even if I'd known four years ago, life wouldn't have been much different than it has been. I'd still be working the job I so love and enjoying each day I have with family and friends. I don't think that doctors ignore our symptoms, but are just guilty of viewing us through the lens of their specialties. ALS is so variable that there is no absolutely obvious set of symptoms to be diagnosed...except through hindsight. THIS moment is the ONLY moment we are sure of having, whether we are terminally ill or healthy and hale.
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