Oh, Shoot!! Now I'm mad all over again. OTF was withholding a diagnosis when he didn't even do the right work up!!!!!!!!!!!!!!!!!!!!! take a breath !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Okay, he's on the fire for tonight!
idiot!!
Grrrr....
Q
I know that it's hard to remember everyone's details so no head hanging allowed!!
I can't even remember my OWN details half the time! LOL
I would be willing to post my timeline in my journal after I do a few adjustments to it...I have to take out some personal info. (Dr.'s names, etc....)
Also, I don't have any of the tests I've had on it either....Maybe I'll add them at the end very briefly....
Quix, OTF didn't even TEST my spinal fluid for O-Bands at all!! That's what had me so ticked off a few months back....
There are a few threads on that topic, but of course I can't remember what they were....
I'm going to try and work on my timeline today, but I am having one of THE worst cases of cog fog today! BLAH!
Take care,
Tammy
In all honesty I can't remember Tammy's details. (hanging head) If the LP was negative or the history of attacks and remissions was not clear, it would place her in an "atypical" position. But, I also suspect that this is a neurologist that does NOT want to suggest a diagnosis like MS, until she can say they are willing to treat. That's an okay position. Most patients are as well educated on the topic as ours and wouldn't know the difference.
It is also possible that she saw something in the timeline that strong suggested she rule out another mimic.
Yes, Tammy, your neuro experience was really what we all hope for. Though, I have to admit, it is like she was conceived and forged here on the forum, LOL! All the things that we espouse so strongly, and all the things that we tell people to do to prepare.
Tammy, you are in good hands. She probably also knows that you have been ping-ponged back and forth about this diagnosis and won't say anything until she is ready to commit, for your sake. She may also be saving face for OTF. If docs see that another doctor has really put out the effort, they don't want to badmouth him or make him look bad if there is any chance it isn't MS.
You had a stellar experience! Bask in it! Enjoy the feeling of validation. But, Girl, you are going to be needed here to describe what the experience should be like!
Redoing the workup so that they can have results in a lab they trust is not unusual. They may know how varied the quality of testing and interpreting can be.
Tammy, would you be willing to post your timeline in your journal so we can see it?
Quix
No need to apologize, Kristin.....I was wondering when someone was going to pick up that lovely "atypical" word.....
It really shocked me, too.....
You know, maybe my head is still...um....up my....no...in the clouds from finding such a wonderful MS Specialist that I'm not yet looking at any negatives.....
OK, now I'm confusing myself....LOL
Tammy :)
PS---I am one of the LEAST impatient people on the planet, too...That makes it all the more difficult....
Hey,
OK friend, if you can be patient than I certainly can too. I just know how hard this is for you to keep going forward when you haven't got a real answer yet BUT you are right. They are basically saying they do not want to take much of anything Dr. OTF has done and are starting from scratch the RIGHT way to rule out MS or not.
I guess technically that is what alot of people need since most of these neuros don't seem to know a neuro exam from a rectal exam, LOL!
Sorry if I was negative!! I do not want to cause you any distress or concern . . . just want you to be treated already. Patience has never been one of my best virtues hence the ADD! You are worth it though and I will do my best to calm my booty down!
Love and Hugs back at ya!!
Kristin
Hi Kristin!
Honestly, I felt the same as you did--at first! Then I realized that at least they're going to start over and do things according to their standards....At least they care and are helpful, supportive, and thorough.....
All I want is to know what is going on with me, and how they are going to treat it, no matter if it's MS or not....
I had a feeling that the "atypical" thingy was going to raise a few eyebrows....LOL
Also, I don't have a "proven" case of ON because they can't even see my optic nerve in my right eye due to the Asteroid Hyalosis.....I am going to see one of the world's most respected eye doc's on Tuesday! We'll see what he has to say....
Don't "hang it up", Kristin.....I won't let you! :)
Love and HUGS!!
Tammy
I am soooo happy for you Tammy!! Finally a neuro who knows WTF she is talking about ands how to do a neuro exam!!
Quix: Here is my question:
Why would they not consider Tammy's case classic MS? She has positive MRI,
+ Babinski & Romberg, has had Optic Neuritis and more than one physical attack?
Am I missing something? To be honest I am a bit concerned that someone that has so many objective and subjective signs is still being told they don't think it is MS or it is an atypical case. If Tammy cannot get a dx with all this I might as well hang it up.
I know they want to be sure but come on. Sorry if this sounds negative, not trying to be. Just a little frustrated right now - sorry for venting it.
Love you Tammy and glad you are one step closer to a dx!!!
Kristin
OK, I'm going to find a timeshare by where this clinic is make an appointment, book the timeshare, and tell them I want the doctor that Wingnut had! LOL
It is so wonderful to know that such doctors exist, and that YOU found one!
Kathy
I am so happy for you. I have a good feeling about this one. I wish you the best because you deserve it. You have been so caring and supportive to me and your friendship has meant a great deal to me.
I think DR OTF should be weenie roasted with a nice rusty poker (hehe). I have a little devil in me sometimes so forgive me for feeling extra onry. I guess it's because of being cope up in a hospital for a week.
I was anxious to hear how your visit went; I too, just returned from the MS Clinic in Ottawa and hit it off immediately with the Doc; a female as well. Same result; my lesions are not in the normal MS region and although some symptoms mimic MS, some don't. More testing on the horizon - when she mentioned another LP to me, my immediate thought was...no wonder our health care system is going broke - I'm repeating every test for every doctor! Now my feelings are that I'm too determined to get a dx to care anymore. I was thinking of you yesterday and am relieved that if nothing else, someone is finally listening and you have connected with the new Neuro! I wish you the best...
Debi
PS--I forgot to mention that LP #2 may be on the horizon THANKS to OTF messing that one up!
I think Wanna was right about it being Weenie Roast time for him again!
:)
Sounds like the specialist was defenitly on the case from the word go...
I'd imagine the waiting isnt as bad with a Dr. who is taking such care and intrest in what you say. A little bit of divine intervention maybe to have her walk in the room yesterday instead of the Dr. you made a the app. with.
I saw your list of Myths about MS, its a great thread.
Maybe there ahould be one...You know you have a great Dr. if...
There humble enough to Thank You for...ANYTHING!
I'd imagine thay thread may not be so long:)
Well Tammy, sounds like you are really on the path to making some good headway on this, thats wonderful!
I'll be looking forward to your updates when your ready to make them:)
Jessie
Good Morning!
First of all I wanted to thank Wanna for coming to my rescue last night when I was too tired to form a sentence! Thanks Wanna! You are a true friend, you sweetheart!!****BUG HUGS!!**** LOL
OK, I wasn't sure whether or not to post on this same thread, but here I go anyway...
To be honest, I am still in shock because of how very nice this lady doctor was! I had "heard" from many here that these doctor's do exist, but I had given up hope that I would ever meet one of them....WOW!
She actually "thanked" me a few times for bringing my timeline and said it was "excellent".....Upon starting my visit (after I handed her the timeline), she asked me to start by telling her what I used to be like before any of this started! I swear my mouth must have dropped to the floor because I have NEVER had a doctor care or be interested enough to ask that question....again, WOW!!
After I briefly described the massive changes in my life due to "this", she proceeded on with the timeline! I am dead serious when I say that she went over every single word on that thing from birth to present! (I had a hernia operation when I was not even a year old and we talked about that even!!)
She must have asked a zillion questions about things on the timeline....I was absolutely impressed more than words can say....
QUIX: Thanks from the bottom of my heart for pounding into my stubborn head how very important the timeline is.....At the risk of repeating myself: THANK YOU!!!! :)
Oh yeah....Did I say, "Thank you"???? LOL
After this. the wonderful Neuro moved on to the Neurological Exam...again, WOW! She performed tests on me that I didn't know existed....OTF didn't even come close to doing the things she did....It took about an hour just for that part alone....
Right away she told me about the positive Babinksi in both feet and the positive Romberg's. (thanks for that technical name Wanna! )
There were several other things in the Neuro exam that I flunked, but I can't remember what they were at the moment....
(I do remember that there were a few things in my right leg having to do with reflexes and vibration, but.....sorry)
We discussed my eye issues and I brought my digital pictures along with me....She said, "Would you mind if I take these and let our Opthamologist look at them?" Of course I gave them to her right away! :)
OK..this is too long....Bottom line:
After going to review everything with her colleagues (MRI's, test results, etc...), she came back to the room.
She said, "I know this has been quite a long process for you, but obviously we want to give you the correct diagnosis. Looking at all of your tests, etc..., our first diagnosis would NOT be MS....However, IF it is MS, this would be an atypical case. (Calm down Quix!)
...." Your Neurologist has ruled out a lot of mimics, but there are quite a few more that we'd like to rule out before being confidant enough to dx you with MS"
This is when she explained about basically starting over with a work up of their own. (done with proper MS protocol). And so I wait........
Thanks so much everyone for your prayers, support, notes, laughs, etc.....I am so thankful for each and every one of you!! (I'm not crying, honest!!)
Love and Hugs!
Tammy :)
I'm with Heather! Send this woman something! A thank you letter even! May she never lose this energy.
I was impressed w/hearing that she wanted to know how you were "BEFORE" this all happened! Woo Hoo! It's on the Prep list for us to bring up to the Doc, but we shouldn't have to!!!!!!!!
Looking forward to more - this made my morning. Can you all feel it all? That restoring of "faith" in Docs - aaaah, it's a great feeling!
be well,
SL
Wanna is a good friend to all, isn't she? God Bless her.
Tammy, let me know where to send a bouguet of flowers to that great Neuro. The next time you see her, tell her that there are many Neuro's that could use a crash course FROM HER, about caring for and listening to their patients. When you all have a chance to chat, maybe you can fill her in on the "horror stories," NO really, I wouldn't want to spoil the good rapport you already have with her, with horror stories about other Neuro's. Just tell her that she is a fantastic doctor and you sincerely appreciate her listening to everything you had to say and not rushing you.
Doctor's love a pat on the back...just ask Quix..LOL, so make sure you tell her how great she is. Sounds like this lady knows what the heck she is doing and does it well.
I feel that answers are just on the horizon, don't you?
Like Quix and the others have said, we want all the details, when you are rested and feel up to posting.
Much Love Honey and Big hugs,
Heather
Hope you feel better real soon, we wanna know all the ins and outs, but its so great you found a good neuro. :) CJ
Hey, girl! We want you to rest up, but then -- SPILL! It sounds like it couldn't have gone better!
I'm very happy things went so well. I know it feels like a huge build-up to these appointments, and you never know how they're going to go. Yahoo that it went so well!
Thanks for updating us, Wanna!
Zlla*
Wow, sounds like Tammy's finally off the fence and on the road to some answers.
that is a great start on the road to DX. i will keep you in my prayers.
Mike
WANNA,
THANKS FOR UPDATING US ON TAMMY'S NEURO APPOINTMENT.
A NEURO OF THIS CALIBER IS WORTH ITS WEIGHT IN GOLD.
A TRUE NEUROLOGICAL EXAM,THIS SPECIALIST,IS THE REASON WHY WE NEED TO SEE KNOWLEDGABLE MS SPEACIALIST VERSUS A GENERAL NEUROLOGIST.
TAMMY, SWEETIE YOU MUST BE RELEIVED AFTER THIS VISIT.YOU WILL GET YOUR ANSWERS SOON.
THE WAITING TO SEE A MS SPECIALIST MAYBE A FEW MONTHS BUT WELL WORTH IT.
UPDATE US WHEN YOUR UP TO
T-LYNN
Thank you soooo much for letting us know how she is doing and that her visit was productive and positive!!! I was really worried it had not turned out good.
Tammy - we will be waiting anxiously for a full update - I want expressions, comments, your responses etc!!!
Going on a field trip tomorrow with my sons class but will be back tomorrow night to get my scoop!
Love ya!!
Kristin
Okay, you MAY rest, if you have to.....but we want a full and embellished accounting of this landmark visit! All the Limbolanders need to know that these neuros ARE out there and when you find one, you can't believe the difference! Once you have had a real neuro exam, you can never go back to the lackadaisical ones.
And WE get credit for the timeline. The really good doctors love the timeline! And they want to know how all these problems have changed you and what you have lost!
Wanna - Thank you so much for the quick stand in, though you have whetted our appetite for the story ahead! Oooooh, you know I was hanging on every "buzz word:" thorough, timeline, MS Protocol, WITH contrast, 3T, +Babinski, +Romberg. Wow!! as crash course in our own forum.
This is so great. Tam-Tam, you are going to get some answers, sweetie.
Quix
Hurray! Some progress! I hope this is the beginning of her trip out of Limboland! An dits always nice to hear of good docs.
Penn