Lou Gehrig goes to the doctor

[KarenNWendyn]

Lou Gehrig is having all kinds of bizarre neurological symptoms, so he goes to see his doctor. After a comprehensive evaluation (including many tests), the doctor turns to him and says, “I know what you’ve got. It’s called Lou Gehrig’s Disease.”

 

[Nikki J]

Funny. But it actually makes a point. It is frequently said and generally accepted that ALS is not one disease but many. Personalized medicine is all the rage too. And every PALS is different. With gene therapy I can see codes being added for Sod1 disease, FUS disease and especially for c9 disease as c9 causes other neurological diseases. So Lou Gehrig had LouGehrigs, you have KarenNWendyn disease and I have c9 disease/ Nikki variant

 

[Lkaibel]

Brian’s ALS included from day one numbness and tingling and a friends husband had bilateral presentation that looked like a possible stroke.

I met a man last year who’s ALS has not progressed in three years- after putting him in a chair with no use of left hand and can’t swallow most food.

Yup unique to each and all.

 

[chally]

Yes that is funny!

I have said to folks right from the start that I have " chally erb " disease

 

[KimT]

Lenore, I had a very unusual onset as well. I've always had tingling, especially in my left foot and leg. It's like the sciatica nerve is just freaking out. Not a lot of pain, just tingling and buzzing. Nothing showed up in the MRIs or NCS to explain it but the doctors think it's just part of it, for me. My symptoms still are dominated by pain. Sometimes I wonder if I can only walk a short distance is totally related to weakness or is it the pain in my ankles and knees. I do see atrophy around the joints so maybe the pain is from the lack of support. All I know is that it's the most complex puzzle I've ever come in contact with.

That's one of the reasons I'm trying the natural approach with therapy, including diet and supplements. My RT came Friday and told me to keep doing whatever I'm doing. I don't know if what I'm doing is making any difference but it feels right for me.

 

[Lkaibel]

Brian has also had pain and soreness from day one. The ALS Doctor said in addition to ALS, Brian has “multiple non specific nueropathies”. I think that means “we have no clue” in Medical terminology

One helpful thing I have noticed is that the Doctors we see are always good game and ready with medications. Brian has turned down the multiple pain meds and anti depressants and sleep aids offered, but I for one like knowing we could get them.

 

[Romeosc]

For 8 months, 4MRIs, a CT scan with contrast, 2 EMGs, Nerve tests, Spinal tap and drain 40CCs of spinal fluid. 4 nuerologists etc.... They said we are playing "stump the doctor"

Mayo Clinic in MN diagnosed ALS after 24 hours.....

You never know!

 

[Jrzygrl]

DH is "one in a million" according to the docs. Mainly LMN, but there's "something else going on". No UMN symptoms - yet.

It's definitely a crap-shoot.