Symptom onset question

[gooseberry]

In the 5 years before diagnosis, Steve had many hospital visits for weird metabolic things.

First he developed gout
Then in a 3 mo period he went from a normal blood sugar to over 700. That is as high as it would read.I found him on the couch incoherent.
Then he had gallbladder attacks and had it removed
Next came multiple attacks of kidney stones and treatment with the stone crusher.

I believe this disease is all about something going wrong with the metabolic side and it causes inflammation with attacks the neurons. My personal theory.

 

[affected]

If ALS is really a group of diseases, not a single one, then you could be right Steph.

Chris had only ever had one serious illness - chicken pox as an adult, many years before ALS.

He had never been admitted to a hospital, had never had blood drawn, and had not even taken a single antibiotic as an adult.

I guess that is one of the reasons finding a cause is so hard - the differences are just so vast.

 

[swalker]

The first thing I remember noticing was catching my right foot while walking across the carpeted floor of one of my customers. It happened quite a few times and I started looking for irregularities in the carpet or undulations in the floor that could explain why.

I mentioned it to my doctor, who referred me to a neurologist.

In hindsight, there were many other things. I started missing steps while going up stairs, walking slowly with an awkward gait, having trouble keeping my bike centered in singletrack, etc. etc.

Steve

 

[diagnosed2016]

We think general muscle stiffness, cramps and fasics started at least a year and a half before diagnosis this year. Weakness started last fall but was attributed to a fall that happened at the same time.
I know we caution people that the fasics mean nothing but in our case they really were one of the first symptoms. I suspected ALS last summer before there was any weakness. (Very strong Familial history)

 

[Nikki J]

Diagnosed 2016 I was told by my neuro that with familial sod1 fasciculations were not unusual as a first symptom unlike with Non genetic ALS. Is your family SOD1? She also thought it could happen with other FALS that has not been studied as much. I suppose it makes sense as with the genetic forms the genetic defect is always there lurking from birth

 

[diagnosed2016]

Nikki, that's really interesting. Because my husband has a job that is physical, he dismissed a lot of symptoms away as part of the consequences of that. We aren't SOD1 but apparently they've found our particular profilin1 mutation in only a few families so it hasn't been studied. My husbands family all donated samples to Dr Siddique so they've been looking at ours for a while but don't have many examples beyond our family and a couple others.

 

[Dazeddawn]

Being asked why I was limping, and thinking really? Am I oh......
I really hadn't noticed.

Limping and everyone asking why and It was crazy my legs feal like I have sandbags tied to them is the best way I could describe it, then I started falling OFFTEN. It took more then a year and a half to get a diagnosis.