Status
Not open for further replies.

Doglady

Distinguished member
Joined
Aug 6, 2018
Messages
130
Reason
PALS
Diagnosis
04/2018
Country
US
State
MN
Hello all!
It's certainly great to be a part of this group of experts - and I do appreciate all the helpful advice I've received and read in past messages on various topics. The knowledge and wisdom here is awesome and I've learned a lot! So, where else would I go when I can't figure something out? ----- I've have a hard time answering the question about when my ALS symptoms actually started so throwing this out here to see what others may think. I'd really like to have a good answer! Firstly, I was diagnosed 8 months ago at age 69 with limb onset ALS after drop foot and many falls over the previous year. Other than ALS I have always been healthy and have had no serious health problems. That's the simple part.

The confusing part in determining onset is that for about 10 years prior to diagnosis I had a few vague ALS-like symptoms. First was a weak ankle on my right leg- the one ALS is attacking first causing falls or sudden collapses with increasing frequency. Secondly, I'm a dog person (hence, my log-in name) and remember noticing that I was not able to walk as fast as before or as others when we were out and about on hikes with our dogs. It seemed like a general weakness and I noticed some exhaustion after many activities, such as gardening. I really paid no attention to it except to keep pushing myself to stay active and try to keep in shape. I basically attributed it to age. Then, thirdly, about 3-4 years before diagnosis I started to have nightly leg cramps - so started taking magnesium which only helped some. Again, thought nothing of it because I had experienced nocturnal leg cramps since childhood. They had even hospitalized me for them at the age of 4 but since then it was sporadic. (I do think this was a co-incidence.)

When did my symptoms of ALS start??? Do these three sets of weird symptoms; ankle weakness and falls, general weakness and leg cramps fit in with any known pattern in the early progression of ALS? In some ways, there are times when I think I've always had ALS - crazy, right?

Thanks, folks!!!
Mary
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,941
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Hard to say. Did the ankle thing slowly progress into further leg weakness? It would be weird to stay the same for a number of years if that were onset. The other things are too vague and common to attribute I am sure there are many women of your age who do not have and will never get ALS who have experienced cramps and fatigue.

From the point of view of getting into trials you want your onset date to be as late as possible. Many trials have a time limit from symptom onset. It is sometimes diagnosis date but not always. It is to your benefit to be a fuzzy about early symptom start as you can
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,840
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Excellent question Doglady.

No one knows when they lose their first motor neuron. We don’t feel anything associated with this. It takes losing an awful lot of them (I’ve heard up to 70%) before we notice weakness. However, I’m sure we notice more subtle levels of weakness earlier. Competitive athletes and performing musicians may notice changes even earlier because they are so tuned into muscle performance.

I wondered the same as you. I was diagnosed in 2017. But looking back, I recalled wondering why my left leg seemed weaker when bicycling hard up steep hills back in 2013. That’s the only time I noticed weakness until my foot drop in the same leg in 2017. The cramping started in 2016 or maybe even earlier.

It’s easy to chalk these things up to aging, arthritis, or injuries when there’d be no reason to be thinking about ALS. Common things are common.

Btw, I’m now “walking” my doggie with my wheelchair. It works great using a harness on the dog so they don’t hurt their neck, and training slowly and gradually using treats. We’re quite a sight in the neighborhood.
 

dldugan

Distinguished member
Joined
Oct 5, 2018
Messages
203
Reason
PALS
Diagnosis
09/2018
Country
US
State
illinois
I was diagnosed in October, but as I look back I think I was exhibiting symptoms for at least 3 years before the DX. It was attributed by the doctors to aging—I am 77. I am not overly disturbed by this as for at least those three years my family didn’t have to carry the burden of beast. Since the DX I have gone from cane, to rollator, and very soon to a wheelchair.
 

Doglady

Distinguished member
Joined
Aug 6, 2018
Messages
130
Reason
PALS
Diagnosis
04/2018
Country
US
State
MN
Nikki- Good point. Maybe it's better not to know and as Wendy says - we never do. And yes, my original assumptions about age being the cause of those symptoms was probably right anyway. Wendy - sounds like our progression is somewhat similar, thanks for sharing your experiences. AND, I will definitely be using a harness this spring for doggie walks. My little boys are kind of wimpy about snow and ice - not to mention cold! Didugan - I agree! I'm also glad I didn't know any sooner than I did that I have ALS. Between the time of my first visit to a neurologist where it was whispered as a possibility and the second follow up to all the terrible tests when I got the DX I did absolutely no research or sharing of this possibility. The less time we or our loved ones have to worry about this the better. Does anybody know if ankle weakness generally accompanies the foot drop and weak leg situation? It just keeps progressing.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,520
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
My local neurologist thinks the first weakness sign for me was in 2012 when I twisted my ankle. I was always very athletic and I twisted it getting up out of the chair. It was a very bad sprain but healed. Then in 2013 I fell and suffered a TBI while running. I did trip over a crack so I didn't suspect anything related to a neurological disorder.

While swimming in the Summer of 2014 I had very bad cramps in my feet, primarily in my left foot. That same summer the fasciculations started. I was already going to a neurologist for vestibular damage and he noticed brisk reflexes and asked me to go to Mayo Clinic. I didn't follow up on his recommendations until six months later when I noticed I was losing weight for no reason and my running had slowed to walking with a much shorter distance.

I believe mine started in 2012. I was diagnosed in 2015 even though the EMG pointed to it in December 2014. I was still very strong, according to the doctors. I knew I was so much weaker than normal but it took another nine months for them to confirm.

One specialist I spoke with thinks that it takes many years to show up clinically in a small percentage of PALS. If I had refused the EMG and just done an exam, they would have dismissed me because lots of people have brisk reflexes, cramps, and fasciculations.
 

Doglady

Distinguished member
Joined
Aug 6, 2018
Messages
130
Reason
PALS
Diagnosis
04/2018
Country
US
State
MN
Very interesting, Kim. Sounds so familiar. I also had foot cramps and fasiculstions before DX too. And like you one of my ankle twist falls was also very bad. It was just a short time before the foot started to feel floppy. I think that specialist was right - some people probably take a while to be clearly ALS. (Of course it doesn’t help when you decide you don’t like your primary care doctor and just stop going until you are forced to find a new one! ) Just wondering - did your ankle continue twisting?

When you fell after tripping on the sidewalk crack and got your TBI did you later realize you had foot drop? My other big pre diagnosis fall resulted in nerve damage to my arm was from tripping over a low dog gate! You were certainly very athletic and active- must be hard to have to slow down. I appreciate hearing your story and thoughts. Cute doggie, by the way!
Mary
 
Status
Not open for further replies.
Top