News About Moki's Neuro Appt

[doni54]

Moki wanted me to let you all know how her neuro appt went and about her daddy's surgery.  She will be around tomorrow, tonight she is exhausted.

I just copied what she wrote to me as it is the best explanation:

Well I was right it was a bust. She took less then 2 minutes to look at my MRI which she apparently never had looked at herself in 4 months and said that my lesions were too small and not in the right place. She said if I had even one lesion at 3mm she would have considered MS but at this point she doesn't think it is.

She did no exam and did not even ask me if anything had changed since I saw her last. I tried to tell her the new things going on but all she would keep saying was that my lesions were not sufficient and therefore not MS. She did say that she believed there was something wrong and from the way she spoke she made it sound that the problem is in my central nervous system.

She did give me something for my spasms and also a script for massage therapy. So I guess I should be happy that I got that much. She said I need to find a GP to help me figure out where next to go. Ya like I haven't been trying!!! She did say she would see me again in July in case I don't get anywhere. Yeah me.lol

They cancelled Daddy's surgery till Monday now. Daddy is upset. I think I'm still going to take tomorrow off even though I can't afford it so I'll be on then to talk with you then.



So keep prayers going for Moki and her daddy!!!

Thanks,
doni

[cjacks]

BB

You made me laugh-out-loud..  You DO get my jokes!!

[mokibear]

Jo, Please, please, I would love a story of Dorothy dropping a house on wicked witch.lol Please.

I would love some ice cream, orange pineapple would be perfect.lol

Jo hon, thank you so much for the kind words. I guess after that there is no way of lurking.lol BTW I love your corny jokes. Thank you also for the love and prayers for my Daddy. Love ya tons too.

Oh Winnipeg is where I'm going to get my butt kicked too. It's a couple of provinces over from me so I think it might hurt.lol

Shell, ya she was something else, that's for sure. I have 8 lesions but apparently they are too small to be of any significance. I even asked her about going from 3 to the 8 but she said it didn't matter? I was more angry that I had to lose a day off work to hear that ****. It's all good. Now I can get referred back to the neuro who has a brain.lol

I won't wave the white flag quite yet but I'm losing patience. 3 years of this is 3 years too long.lol

Hugs and love to you both
Miss Bear

[sllowe]

W T F!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

She was a MS specialist?  She doesn't deserve you as her patient.

Do these Drs actually think that when they say dumb things like this that we are stupid enough to believe it?  So, you should of walked out of there whistling dixie because this expert "peeked" at your brain now you should rest assured you are not going to die from it. If you thought you were going to die, you wouldn't have been sitting there w/her - that is for sure.

You have how many lesions??? I believe it's more than me.

I'm sorry Moki, I'm sorry this went this way. I'm sorry if my rant on your behalf keeps you angry.  I just can't help it. I'm sure this has your chin to chest, but you get your head up high and thank god she's not your dr.  

Sending strength your way and to your Pop too,
Not going to let you wave any white flags just yet,
Love,
Shell

[cjacks]

BB

Tis a frustratingly sad business , this Limbo Land journey..  you should have another story ..  Do you think Dorothy dropping a house on the wicked witch of the neuro dept. would boost your spirits.

Want some ice cream..??  

Okay , no more mister nice guy....    Why do you think you need to lurk..???   You need to help out here !   You are an EXPERT at this..  ALL of it !!  You know all the drills..  all about bad neuros ..  all about sx.   (yes you do)  ...  frustration,sadness ,working while being ill... not feeling well and still being a loving caretaker   ....  all the tough stuff

You also are a caring, compassionate friend , a good listener, have a great sense of humor  ,  very punctual and neat :)   ,   you give great advice..   you are wise... ask good questions ,  and you get my corny jokes ....     I could go on but I have cog fog  :)

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Miss Bear, we need you..  You are an integral part of this wonderful forum.

I will be sending love and prayers for your Dad's safe surgery and speedy recovery.

LLP

BTW ..    Where is Winnipeg ??   :) :)    

Jo

[mokibear]

Lulu, no intent on dropping out of sight. I guess I am just feeling down and felt like I don't have much to offer in the way of symptoms and their diagnosis. Lurking can be fun though.lol But I will offer what I can when I can. Deal? Thanks

Quix, I hope to that the decision was made for his benefit. I'll try to let you all know how it went on Monday.

Hugs to you both
Moki

[Quixotic1]

You bring up a good point about the powers that be.  Friday is the worst day often to do a big surgery.  Sometimes it is hard to staff the post-op ICU adequately over a weekend.

Let's hope the decision was made for his well-being.

Q

[Lulu54]

Moki,
Yep, this went about as bad as it could go for you - I'm still sorry to hear that.  Now I have to challenge you on becoming a lurker or dropping out of sight here - that's not allowed and you know it.  We all expect you to be around for a long time helping out with others working through this process.  You have so much experience it would be a shame to not share your perspective.  So no disappearing, ok?  

my heartfelt best to you and your daddy, Lulu

[mokibear]

Thanks Quix, I really appreciate your words confirming how I felt about her. Yes good riddance to her but I too feel for anybody that has to deal with her.

Thanks also for thinking of my Daddy. He is doing better today and is just trying to be patient. (not easy for him lol) I'm sure there was a good reason for canceling, it just took us off guard as they had been trying all along to bump him up. It could very well be that the "powers that be" thought Monday would be a better day.

Hugs
Moki

[Quixotic1]

This "specialist consultant" showed her stripes when she began making really stupid remarks like, "I peaked at the MRI."  No, dear, a neurologist is paid the big bucks to examine the MRIs because nobody else can do it.  Without looking at another lesion she dismissed it as "probably nothing?????"  OMG, I would hate to see her in a crisis!  She wouldn't recognize a variant of anything even it were going to kill the person!

Your assessment is correct.  By dumbing down she doesn't have to deal with anything that isn't classic MS.  She will leave a ton of people without a diagnosis because she is too lazy to think.  I cringe to think I share a profession with her.  What a mediocre beetch!  I am also sure that her patients get the same unthinking and lackluster care.  Good riddance, but horrible waste of your time.

I'm gl;ad you have the earlier Doc to help you think through all of this.

I hope the weekend goes smoothly for your dad and you and will be thinking about him on Monday.  Perhaps there was a call in sick and they couldn't staff the OR.

Take care, Quix

[mokibear]

bearsmum, this was a MS specialist hence me being ticked. She is very rigid in how she makes a diagnosis and one must be totally "classic" for her to even consider MS. It is frustrating to have to drive that far to be told nothing. My fingers are crossed for you along with anything else that is crossable on me.lol I really hope you get a top notch neuro this time.

Rena, your critter as cute as can be needs to become a ninja or something, then it could have kicked that neuro's tushy for me.lol

I'm going to try to get referred back to the neuro who sent me to her in the first place. He is the only one who has taken me seriously and really seemed to want to help. The letter he wrote after said that he would see me again if I didn't get anywhere so I'll try to get back into him. I just won't be able to do it till later next week. Got to get Daddy through his stuff first.

Hugs to you both
Moki

[Rena705]

Moki honey...please go to my profile and look at the picture of my lesions on my brain...they are pretty darn small (at least in my mind) and although there are lots of them I doubt that yours could be any smaller and still be visible!  I say you need to see if you can get into a different neuro and take your MRI with you.

I know that you have only Dad on your mind now until Monday and I will have you both in mind as well.  Concentrate on getting him through this and then you can turn back and get back into the swing of finding out what is going on with you ok?  You know we are here for you sweetie and I will be here all weekend if you need to talk ok?

Lots and lots of hugs,

Rena

[bearsmum]

My dear friend, I sure feel for you as that is just about how the last neuro I seen last June '07 treated me.  Was in there and out in about 15 minutes.  Told me to go home and learn to live with it.  I had to travel 6 hours one way to hear this !!!!!
I do think that my next neuro appt will go much better as this one is a MS specialist and everyone assures me that he is a darling and that he DOES really listen to you. So fingers crossed.
I hope that you can get to find a better neuro than the one you seen, I would not waste my time to see her again if I were you.
Best of luck and take care
bearsmum

[mokibear]

Thank you all for your support. I'm not a happy camper as I had to take a day off work, find someone to drive me and all she had to do was either return my phone calls or faxes and tell me not to bother coming down as she did not think at this time it was MS. I was out of there in less than half an hour. The only reason it was that long was because I kept asking questions.

She told me when I walked into her office that she "peeked" at my MRI and nothing jumped out at her so therefore it is in her opinion not MS. She showed me one of the lesions on the MRI and said see it is too small. I asked her about the changes in amounts of lesions and she said it didn't matter as they are too small to really take into consideration. I asked about the questionable spot on my spine and without looking she said it's probably nothing.

I tried to tell her of my new symptoms but she cut me off and said it didn't matter as my symptoms although real are not classic of MS and my MRI proves that. When I asked her what else this could be, she said she didn't know but that there is so much in the central nervous system that they don't understand but I shouldn't worry as I won't be dying from it.

She did book me for July in case I don't get anywhere with anybody else which I am not sure why she would if MS is totally off the table. There was a few more dumb remarks from her but I won't bore you any longer with that.

So I guess I am on the wrong forum but there is no limbo lander one so I guess you are stuck with me. I suppose for now I will just be a lurker as I have nothing to offer anyone. I am going to try to get back into the neuro that sent me to her. He had said he would see me again if I didn't get anywhere with her.

As for my Daddy's surgery, they said that they didn't have enough nurses for them to do the surgery? How that happened we are not sure. This was a scheduled surgery so how in the world could you not have enough nurses? Daddy's heart has been acting up really bad again the last few days and I know he was so pumped to get this over with.

Thanks again for all of your support. You have all made this journey a little more bearable.

Hugs to you all
Frustrated Bear

[Wobbly]

that's one of the most frustating appt we deal with when we see an Neuro...some of them..quite a few of them... just send you off if you don't have the (just right) MRI pics... which is not right.  

as we all know here...it can take more then the MRI to dx anything...and a Neuro should offer other suggestions and help..not say come back in 8 months??  

keep track of all you symptoms and ask for copies of her reports...then call and see if you could see another Neuro it might take another 6 months..but you need to get some help..

it may not be MS..it might not be for alot of us here in Limboland, but we have Neuro symptoms and need help for them.... so hang in there and feel better soon..

call your Dr and see what can be done.. take care

wobbly
undx

[young at heart]

MOKI,

SWEETIE, I GOTTA SAY IT, BUT THIS REALLY HONKS ME OFF TO SAY THE LEAST.

THE NEURO ADMITTED TO THE LESIONS,ADMITTED TO A CENTRAL NERVOUS SYSTEM DISORDER, GEEZE-UM DOES SHE NEED HIT UP SIDE THE HEAD.

MAYBE SHE NEEDS OUR LITTLE GREEN MEN INVADE HER SIMPLETON BRAIN FOR A WHILE,SPASMS THAT GET  RELENTLESS AND SO FORTH.THEN MAYBE SOME OF THESE DARN NEURO'S WOULD REALIZE WHAT WE GO THROUGH.

I PRAY THE SPASMATIC MEDS HELP.

YOU AND YOUR DADDY ARE IN MY PRAYERS

YOU DESERVE MUCH BETTER HEALTH CARE THAN WHAT YOU WERE PROVIDED TODAY.

SENDING YA HUGS AND PRAYERS

T-LYNN

[Lulu54]

Doni,
Thanks for being the messenger.

Moki,
I am sorry you hit the delay with your dad's surgery - usually that means someone in greater crisis needs the OR ahead of others.  Monday will come but I understand the emotions of having this surgery delayed.  

As for your neuro, I am so disappointed that she couldn't at least give you more time and pretend to care.  The massage script sounds good - same with the pain medicine.  I hope both of those help until you can see someone else!

Disappointed for you,
Lulu

[Quixotic1]

I cannot believe that after waiting for a year to hear something that you were dismissed in a heartbeat.  I am sooo sorry this has happened.  It seems that you have so few opportunities to get good care.  You can't get in to see a GP, the neuro's there are too rigid to diagnose anything but the most classic of all MS and the ER is worthless.

I wish we could bring you here to see a really great specialist.

:((

Quix

[Rena705]

Aw Geez honey...what a totally clueless broad this so-called "Neurologist" is!  Why the heck wouldn't she help you now if she thinks she is going to be of any help NEXT JULY!!!???  Arrrrggghhhhh!

Then for them to postpone your Dad's surgery...talk about kicking ya when your down!!!  I am soooo sorry this happened to you and your Dad!

I guess the next time I put the little guy on your shoulder I will have to arm him eh?  Honey, if there was something I could do to help you...perhaps when I get to see db's neuro we can get you referred to him and you could combine it with a holiday to West Edmonton Mall!!!

Well,,,I guess it is going to be a long weekend for you now and I don't blame you for taking the day off tomorrow...you need a break honey and you still need to be strong for next Monday and what follows.  I will be here if you need me sweetie and I look forward to hearing from you tomorrow!

Lots of Love and Hugs,
Rena

[OperaMBA]

I'm beginning to wonder if we need a limboland version of charades, to coax the neuro's along.  Or perhaps pictionary?

"Sounds like...."

I am sorry that you didn't get better information and that they moved your dad's surgery!  That has to be really hard!

Richard