Portrait default
catsmeow
Sex: F
Data Quality: 1 star
ALS: 5 yrs
Bi-Pap
Bulbar: none
Arms: mild
Chest: none
Legs: moderate

catsmeow

Female, 57 years
Anaheim, CA

Primary condition
ALS and 5 more
First symptom
Diagnosis
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About catsmeow

I had left sided weakness that all started, at least clearly, a year ago April (2009). My neurologist worked me up but in the end declared it was diabetic neuropathy. My glucose levels are under control (80-90's) w/ minimal oral meds. Finally, he was persuaded to refer me to UCLA for evaluation. They did a very professional and thorough assessment. I had to go back for an EMG/nerve conduction study but they at least told me they had some ideas as to what was wrong. After those tests, they gave me the ALS diagnosis. Not great but at least I'm not making this up or going crazy.

My neurologist would never say he didn't know what was going on but clearly it was written all over his face.  (I had a stroke, I had Chronic Inflammatory Demyelinating Polyneuropathy, or diabetic neuropathy)  I never had any of the typical symptoms of diabetic neuropathy such as numbness, tingling, pain and out of control glucose levels.

Yes, ALS is a disease of "rule outs" and the basic work up I received needed to be done but no one ever mentioned the possibility of ALS being my diagnosis until the day I was diagnosed.  This was despite having had a previous EMG/Nerve Conduction study.  Apparently, the results were ambiguous last summer but quite clear in May 2010.  When confronted about not giving me any hint about ALS, my neurologist said "they don't typically tell people they are considering this diagnosis because it is life changing."  Well, wondering what's going on in my body for over a year is a life changing experience, let me tell you!  Needless to say my neurologist is now my ex-neurologist. 

I was referred to UCI MDA ALS Neuromuscular Center (from UCLA) where I have been treated with a great deal of respect and caring.  I am going to be a subject in a clinical trial for a drug that is suppose to slow the progression of the disease in addition to Rilutek.

Activity

Profile: 9,360 views
Comments: 6 updates, 0 for others

My CareTeam

Member since: May 23, 2010
Last Login Jan 18, 2014

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