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Update on my neighbor D.

Posted: Sun Dec 06, 2009 4:13 pm
by cheerleader
Got a wonderful call today from my across town neighbor. Our sons are school friends and we have many mutual girlfriends. I referred her to Stanford last summer. D. has been in a wheelchair for a couple years, tried all the chemo drugs, everything, and was slipping fast. She had 4 stents placed in July. At that time, they did an MRI and found a "growth" on her brain...not a tumor. D. said that all the neuros at Stanford looked at it and didn't know what it was, but they would keep their eyes on it. When she went back in October, three months after her stenting, it had disappeared.

Dr. Dake told D she was probably the worst case he's treated. She had venous stenosis throughout her body. D. got 2 more stents placed last trip and she called me today to check in and thank me. Her bladder, spasms, energy and stiffness have all improved. Her voice is stronger and she can take deep breaths. She is doing physical therapy and hopes to get more mobility. She hasn't progressed and for the first time in a long time feels she is actually improving. I told D. I really appreciated her checking in. She wanted to post on the tracking thread, but isn't on the computer much, so she asked if I'd pass along her story. She's happy to be at home, healing and with a sense of hope.

I hope Dr. Dake has included her in his written paper. He's in press now, already accepted. I'll have details on that later.

Thanks, D. You gave me a huge infusion of hope today. Keep healing. You are an inspiration-
cheer

Posted: Sun Dec 06, 2009 4:21 pm
by Salvatore24
Fantastic news :D

Posted: Sun Dec 06, 2009 4:34 pm
by Johnnymac
Very encouraging! Thanks so much for passing the info on!

Re: Update on my neighbor D.

Posted: Sun Dec 06, 2009 4:57 pm
by Rokkit
cheerleader wrote:Her bladder, spasms, energy and stiffness have all improved. Her voice is stronger and she can take deep breaths. She is doing physical therapy and hopes to get more mobility. She hasn't progressed and for the first time in a long time feels she is actually improving.
That is awesome!
cheerleader wrote:I hope Dr. Dake has included her in his written paper. He's in press now, already accepted. I'll have details on that later.
And that is awesome!

Thank you so much Cheer, for all you've done and are doing. I can't wait to read that paper.

Posted: Sun Dec 06, 2009 6:25 pm
by jay123
Thats great for her but also with all the setbacks that have personally bothered you - Cheer- I hope this is another example the great thing that you have helped start!!
Congrats for her and thanks to you!!

Posted: Sun Dec 06, 2009 8:22 pm
by mrhodes40
Wow that is a great report thanks!! I love this
Her bladder, spasms, energy and stiffness have all improved
This is great I am so happy for D! :D :D

Like D I too have spasm reduction that is remarkable and it has made a difference in physical therapy possibilities. We'll see where it goes, but more anecdotal reports of such a thing are very positive! Thanks.

Posted: Sun Dec 06, 2009 10:17 pm
by jr5646
Does that send chills down your back or what???


Thank you for sharing that, Cheerleader...

Posted: Mon Dec 07, 2009 12:27 am
by ErikaSlovakia
Cheer,
please, say hi to D. I wish her the best!
Erika

Posted: Mon Dec 07, 2009 1:51 am
by ClaireParry
I'm so glad she is feeling better.

I have problems taking breaths and it is really un-nerving. I'm tired of my neuro telling me it's a panic attack!!!

Send her my best wishes

Clairex

Posted: Mon Dec 07, 2009 3:26 am
by Mutley
That is so wonderful!! Please pass on my best wishes.

Thanks for posting Cheer!

Posted: Mon Dec 07, 2009 5:57 am
by CRHInv
She's happy to be at home, healing and with a sense of hope.
I am so glad you shared this with us! Thanks!
Tell D. to take good care,
Beth

Posted: Mon Dec 07, 2009 6:33 am
by ozarkcanoer
:D What a wonderful story for a dreary Monday morning in St Louis !

Posted: Mon Dec 07, 2009 7:04 am
by Sharon
Thank you Cheer for updating your friend "D"'s story.
At that time, they did an MRI and found a "growth" on her brain...not a tumor. D. said that all the neuros at Stanford looked at it and didn't know what it was, but they would keep their eyes on it. When she went back in October, three months after her stenting, it had disappeared.
This is very interesting - "D" had something on her brain which could not be identified and now it is gone. Similarly, on my follow-up, my MRI showed the two capillary telangiectasia in my pons to still be present but less apparent. (a capillary telangiectasia is a vascular malformation which is usually asymptomatic).

It is wonderful news to hear that "D" is noticing some improvement -- and to hear that she is hopeful for more mobility -- a great positive attitude for someone a few months ago was scared of where the MS was taking her.

Sharon

Posted: Mon Dec 07, 2009 1:24 pm
by coach
Thankful that D is doing well and hopefully can look forward to further improvements and no more progression.

Posted: Mon Dec 07, 2009 8:08 pm
by MS_mama
the deep breaths got me there--as I have always had this problem with taking deep breaths. Even got my lung function checked, and it's okay. I just chalk it up to the mysteries of this darn disease. Well, another thing I hope can get fixed if I ever have a chance to be tested and treated!