My sister

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Joined
May 15, 2018
Messages
17
Reason
CALS
Diagnosis
02/2017
Country
US
State
PA
City
West Chester
Hi - I have not posted much on my sister for several months....I wanted to wait till after she had her neurologist appointment in late March. In brief, my sister's condition has slowly declined over years to the point that she had no motor use in her legs, was unable to hold a glass, read a book, sign a check, comb her hair, etc. She also had severe systemic itching for months that was driving her crazy. After trying many things, they looked for potential systemic causes (cholestatic pruritus. uric acid accumulation). The only other medication she was taking at that time was low dose Synthroid for hypothyroidism (for about 20 years). They did blood work and there was nothing remarkable other than one liver enzyme test (AST) was slightly high. The doctor put her on cholestyramine ( a very old, very inexpensive drug) last November (presumably thinking the itch was due to bile acids??). As I posted late last year, two weeks later, she seemed to start regaining limited movement of her arms. Over the past 5-6 months, she has continued to improve....she can now hold and drink a full glass of water, hold and read a book, pick up and answer her phone, sign her checks, raise her arms, wiggle her toes, very slightly kick her foot out from her wheel chair, etc. However, her neurologist was not very impressed when he saw her on March 30. He hadn't seen her for ~ 1 year (Covid shut-downs) and suspected she had some kind of infection and was now just back to baseline from where she was when he last saw her. He did, however, give her scripts for PT and she is now doing gentle exercises to further strengthen her arms and legs. The cholestyramine was not really too helpful with the itch (she is now on gabapentin for itching and the relief has been great), but she is super excited about having the ability to do more things for herself. She continues to take cholestyramine and continues to slowly, slowly improve. Wondering if anyone else has ever seen improvement (not delay of progression...improvement)? Or even if they had a UTI or something, got worse and then got better again as her neurologist suggested could be the more likely reason for improvement.Thank you.
 

Nikki J

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Joined
Mar 22, 2012
Messages
11,886
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
It is certainly true that if there is a treatable / recoverable issue that a PALS can improve back to baseline if they worsened during an event. I have experienced this after mild illnesses.

there are reports of reversals of symptoms. You might be interested in Dr Bedlack’s work. Google it. They are rare. Plateaus are more common.

I am glad she is doing better whatever the reason
 
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