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Paraparesis??? Anyone have issues with this?

hope0310's picture
hope0310
Posts: 324
Joined: May 2010

This is what they are calling moms weakness in her legs. There is no treatment for this..think of paraplegic, but not quite...

I believe they will most likely do a spinal tap to see if there is infection or cancer in her spinal fluid....please god no.

Would love info from anyone who has dealt with this.

Thanks so much, Elysia

hope0310's picture
hope0310
Posts: 324
Joined: May 2010

Was really hoping for some insight from someone who has dealt with this.....

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

I did some googling, but didn't come up with much except as a hereditary disease, or a tropical disease. Are the docs thinking the cancer caused this?

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

Here is best site for your moms condition
http://www.asktheneurologist.com/hereditary-spastic-paraparesis.html

Treatment of HSP

There are no effective treatments for the underlying distal axonal degeneration of HSP.Currently, only symptomatic treatments are available. However, oral or intrathecal baclofen or oral dantrolene or tizanidine may reduce spasticity. Urinary urgency may be reduced by oxybutynin. Physical therapy is recommended for affected individuals, which can improve range of motion, maintain and increase lower extremity strength and increase cardiovascular conditioning (which can increase endurance and reduce fatigue). Canes, walkers and wheelchairs can aid individuals with impaired gait.

Symptom severity, age of onset and rate of disease progression may vary widely among patients. It is estimated that three in every 100,000 people are affected with hereditary spastic paraparesis in the U.S.

HSPs are classified by clinical presentation, as either uncomplicated or complicated, and by inheritance pattern. Uncomplicated (or pure) hereditary spastic paraparesis is the most common form and is characterized by progressive lower extremity spastic weakness, accompanied by hypertonic urinary bladder disturbances, and often, mildly impaired vibration sensation. Uncomplicated hereditary spastic paraparesis can be disabling, but it does not shorten life span.1hereditary spastic paraparesis is classified as complicated if the impairments of the uncomplicated form are accompanied by additional neurologic abnormalities that are not attributable to other co-existing disorders.Researchers estimate that uncomplicated hereditary spastic paraparesis represents 90% of all hereditary spastic paraparesis cases, while complicated HSP accounts for 10%.

hope0310's picture
hope0310
Posts: 324
Joined: May 2010

Stayingcalm, they are thinking it is from the cancer, they checked brain lining and nothing showed up, if it did they were going to check spinal fluid. SO far everything has come back clean, which is great, but they cannot find the source.

HOS = thank you I will check out the site, I may have already, not sure, but I do appreciate the research.

Mom has been in hospital since 13th (and was in 8-11 prior to that), she is set for release within 2 days, but will need care since she cannot walk, roll over etc very well.

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Hi again, Hope,

A little more looking around turns up the possibility that radiation to the spine (mostly the area between the shoulder blades) can cause weakness in the legs....but surely they've checked that. I wish I knew more, but I'm just taking stabs in the dark, here, not a good way to advise someone.

I'm going to suggest that you post about this on GRACE (Global Resource for Advancing Cancer Education), where there are doctors that will answer your questions. Dr. West is particularly well-regarded, I understand. http://cancergrace.org/

Keep us posted? And good luck!

Deb

hope0310's picture
hope0310
Posts: 324
Joined: May 2010

Well, mom was able to come home yesterday, which is good, but still no conclusive dx on why her legs are weak. The oncologist said that even though the neuro doc said it presented as the paraparesis, there was no clear evidience that it was and he is thinking that the chemo just wiped her out!?? One can only hope!!

She feels good, looks good...and like I said tumors in brain and spine are gone and one in lung is shrinking as expected.....

She will have physical therapy come out today and access her needs and get that scheduled, that will be a good thing!

hope0310's picture
hope0310
Posts: 324
Joined: May 2010

Less than 24 hours and we were back in the ER yesterday. She started talking nonsense late Thursday night and by Friday morning weakness had returned plus the crazy talk.

Checked brain, checked for UTI...nothing, only thing high calcium which they said could play into the confusion.....I would not even call it confusion, its just nonsense....

Sigh.....

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