Author Topic: Just an update  (Read 8220 times)

JJ

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Re: Just an update
« Reply #15 on: May 13, 2009, 12:21:23 PM »
Thanks to all and Kimbo that was very nice...still waiting....

JJ

JJ

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Re: Just an update
« Reply #16 on: June 01, 2009, 12:15:18 PM »
Okay, good news...she found a really good Nero...she is scheduled to have another MRI Tomorrow..

and was set up for apt. an hour and a half out of her first visit with him. The other Nero said it was

small and he told her it wasn't as small as they had her thinking...saw it first time looking at the MRI

CD she had to get for him. He lost his own sister to a brain tumor which seems to make him more serious

which is a shame. He also set her up an appointment with an optometrist...because of the vision problems

she has been experiencing.  He said he was very disappointed in the other doctor. He also says he does

not believe that the thyroid levels are what is causing the tumor but the other way around. She is feeling so

much better that this doctor is actually doing something...I'm glad she found him. Keep praying it works!

Thanks to all...

Scottietottie

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Re: Just an update
« Reply #17 on: June 01, 2009, 05:42:30 PM »
Hi JJ

I'm so glad you have found a good neuro now. It sounds like he's going to move quickly and actually do something. I hope that things take a turn for the better in the very near future. It must have been awful for both your daughter and yourself to have nothing being done.

Take care - Scottie  :)
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Never do tomorrow what you can put off till the day after tomorrow!

JJ

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Re: Just an update
« Reply #18 on: June 02, 2009, 05:15:17 AM »
Thank you Scottie....and yes she was feeling very let down, scared, and hopeless. With me living in IL and

her in TX...it has a way of making me feel the same but i am sure no where near what she was feeling.

After he talked to her she started crying and said it was because she finally didn't feel like she was crazy

and that something was going to be done. The Rheumy is the one that actually got the first MRI so she

is in good hands with him...just it is Neurological and that isn't his area and he sent her to the Neuro that

just seemed to drag his feet...when he found this out finally he sent her to this new one what a breath of

relief. This new Neuro held her hand and talked as well as listened to her...she half expected that after

she walked out of the office it would all go back to the feet dragging but an hour and a half later his receptionist

called with these appointments. Now if she can get an Endocrine doc that is as good as the other two she'll have

it made. Thank you all so much for listening. I will be posting a question I have about something that is happening

to me recently...but i think my being worried about her may tend to aggravate my symptoms at times

getting feed back and support helps to keep my worry down. So through everyone's prayers you help not only

my daughter but me as well...thanks!

JJ


Chickpea

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Re: Just an update
« Reply #19 on: June 02, 2009, 11:49:58 AM »
Hi JJ

I had tears in my eyes reading your post.  What a wonderful neuro!  If only more doctors realised that sometimes the best medicine is to sit and listen. 

My thoughts are with you and your daughter.

Take care - Chickpea

kimbo

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Re: Just an update
« Reply #20 on: June 03, 2009, 05:02:27 PM »
OH JJ,

Such great news.

I am giving thanks for that Neuro. I am  wondering if the loss of his sister is what guided him into his field of expertise.  It certainly gave him compassion. Bless his heart.

Do, please watch your stress. I will continue to pray peace and comfort on your behalf.

Your daughter also, So happy a good Doc goes a long ways to health issues and knowing he is giving direction to a road to recovery.  :)

Ways to manage your stress levels :  

Allow yourself minimal time to focus on issues and problems, and never in the nite, bed is sacred from worries. We all know how distorted things become when we wake up in the nite.

Manage your busy ..... just say no.

Spend time with  loved ones, people that make you happy and feed your positive spirit.

Push negative thoughts out, with positive thoughts.

I am not saying, I am successful at always thinking positively   ;D   But I do believe we can train our selves with self taking.  And becoming aware when I am sinking into despair of negativity. I mentally shake myself and try to snap out of it.

I have heard of placing a rubber band on your wrist, snapping it to remind yourselves of reoccurring negative thought patterns.


I am sorry if I have over stepped ,   I hope so much that you and your daughter feel great comfort and delivery from the stress that can so agitate.

Hugs and prayers ,  kimbo


« Last Edit: June 03, 2009, 08:43:16 PM by kimbo »
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JJ

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Re: Just an update
« Reply #21 on: June 05, 2009, 02:59:53 AM »
Thanks so much Kimbo, and yes I am really trying to manage the stress.

Well just a little update, she had her eye appointment yesterday and will go back on the

11th for the second portion plus had MRI. They did find that her left eye has more pressure on it

than the right...so not sure what exactly that means...I guess they are just trying to see if

the tumor is putting pressure on it....after the 11th she will go back to Neuro  on 22nd.

He wants to get all the other tests and have time to go over it all because he wants

to talk to her in person not on the phone. This does not make for a patient Nay...she is

now worried again about feet dragging...I know that the not knowing is such a stressful thing.

I think it will all be okay, just so glad he is at least doing something...Thanks again everyone..

as soon as I know more I will post.

JJ

kimbo

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Re: Just an update
« Reply #22 on: June 05, 2009, 06:41:23 AM »
Thanks for the up date JJ.

prayers and hugs, kimbo
Diagnosed March of 2007. SJS/ RA Positive at 80  International-SSA strongly positive at 811-SSB 273
ANA positive at 1:1280
Hashimoto's
Gabapentin, propanol, Celebrex, Synthroid, Cytomel, vitamin D, B complex, Omega 3 complex, and multi vitamins; At 62, I seem to be a low maintenance sjog

loulou

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Re: Just an update
« Reply #23 on: June 05, 2009, 10:15:08 AM »
hi JJ

I have been reading through your posts, and want to send my positive thoughts and prayers for your daughter and yourself. I have 4 daughters and 1 boy, i can imagine what the worry and anxiety is doing to you.

I will keep you both in my prayers and pray for some good results and news. Please try and look afteryourself, take a bit of time out if you can. I wish you all the best.

TAke care.
Loulou
primary sjogrens, primary biliary cholangitis, auto-immune hypothyroidism, Osteoporosis gerd.hiatus Hernia, cold feet, no tears, lacrilube, celluvisc, thyroxine, ursofalk, gabapentin, omerprazole.

Katybarstool

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Re: Just an update
« Reply #24 on: June 05, 2009, 11:24:22 AM »
JJ

My heart goes out to you and your daughter at this trying time. Sending hugs and prayers to you both.

Kathyx

JJ

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Re: Just an update
« Reply #25 on: June 22, 2009, 09:07:36 AM »
Well folks please keep the prayers coming...she was admitted in the hospital Friday night...

the pain meds were not helping her and as a matter of fact the ones they gave her in the

hospital didn't even knock her out.....5 different kinds....should hear more this evening

will keep you posted...thanks for keeping her in your thoughts and prayers.


JJ

Katybarstool

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Re: Just an update
« Reply #26 on: June 22, 2009, 01:03:31 PM »
JJ

Sending you both hugs and prayers.

Kathyx

JJ

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Re: Just an update
« Reply #27 on: June 22, 2009, 07:07:04 PM »
Seems that the tumor not only grew from four months ago to two and a half weeks

ago, but it has grown from two and a half weeks ago to today. Looks like surgery

is going to be next step....More when I know.

JJ

TerriJ

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Re: Just an update
« Reply #28 on: June 22, 2009, 07:34:17 PM »
JJ,

I am sending my prayers and good thoughts to you and your daughter.  I can't imagine how difficult this all must be. 

Terri

dbab

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Re: Just an update
« Reply #29 on: June 24, 2009, 08:05:22 AM »
I'm keeping her and you in my thoughts and prayers.