Aa
Going back to the Neuro with ammo (intellectual, not actual ammunition...)
Ok, so I decided that I'm going to go back to my neurologist and really get down to it with him. I want to know why he thinks I have Transverse Myelitis and not MS. There are so many things that go unexplained with a Dx of TM that it just made me mad. I looked up a bunch of stuff on TM and only small parts of it sounded like it applied to me.
The things that make me think it's not transverse myelitis are this:
1. According to multiple sources, TM is a monophasic illness, and it is rare to have a relapse or second instance of transverse myelitis, unless there is an underlying condition, such as MS.
2. Studies done suggest that most people that develop TM do NOT go on to develop MS _unless_ there are oligoclonal bands present in the CSF and are at a substantially higher risk of doing so than patients who do not have them present. (My LP MS panel was positive for oligoclonal bands in the CSF suggesting (but not diagnostic of, in itself) MS.
3. The McDonald criteria. I've had two attacks more than 3 months apart, both with objective clinical lesions, albeit they are both in my spine. They are in different parts of my spine, though and that technically qualifies them in the criteria. Also, as mentioned above, I have oligoclonal bands present in my CSF.
4. Other diseases (I've been told now by both neurologists) have been ruled out by blood tests and other means.
5. Nothing I've read indicates that transverse myelitis causes cognitive issues, which I'm clearly experiencing, or heat sensitivity, which I also clearly experience.
So I guess that's my argument. I don't know if it holds water, but I pay my doctors for answers and don't think I've gotten them from him. I can't help but ask myself if I'm right in doing this though...
The things that make me think it's not transverse myelitis are this:
1. According to multiple sources, TM is a monophasic illness, and it is rare to have a relapse or second instance of transverse myelitis, unless there is an underlying condition, such as MS.
2. Studies done suggest that most people that develop TM do NOT go on to develop MS _unless_ there are oligoclonal bands present in the CSF and are at a substantially higher risk of doing so than patients who do not have them present. (My LP MS panel was positive for oligoclonal bands in the CSF suggesting (but not diagnostic of, in itself) MS.
3. The McDonald criteria. I've had two attacks more than 3 months apart, both with objective clinical lesions, albeit they are both in my spine. They are in different parts of my spine, though and that technically qualifies them in the criteria. Also, as mentioned above, I have oligoclonal bands present in my CSF.
4. Other diseases (I've been told now by both neurologists) have been ruled out by blood tests and other means.
5. Nothing I've read indicates that transverse myelitis causes cognitive issues, which I'm clearly experiencing, or heat sensitivity, which I also clearly experience.
So I guess that's my argument. I don't know if it holds water, but I pay my doctors for answers and don't think I've gotten them from him. I can't help but ask myself if I'm right in doing this though...
LOL!!!!!!!!! I love this movie!
A month is not so bad, the holidays will make it fly. Book it.
Keep us posted, please!
-Shelly
A month is not so bad, the holidays will make it fly. Book it.
Keep us posted, please!
-Shelly
Well, the appointment is apparently going to take some time - he doesn't have any openings until after the first of the year, so unless someone cancels, I won't see him for probably another month.
That's ok though. I can wait...
Vinny Gambini: Ms. Vito, it has been argued by me, the defense, that two sets of guys met up at the Sac-O-Suds, at the same time, driving identical metallic mint green 1964 Buick Skylark convertibles. Now, can you tell us by what you see in this picture, if the defense's case holds water?
[Lisa examines the picture]
Vinny Gambini: Ms. Vito, please answer the question: does the defense's case hold water?
Mona Lisa Vito: No! The defense is wrong!
Vinny Gambini: Are you sure?
Mona Lisa Vito: I'm positive.
Vinny Gambini: How could you be so sure?
Mona Lisa Vito: Because there is no way that these tire marks were made by a '64 Buick Skylark convertible. These marks were made by a 1963 Pontiac Tempest.
D.A. Jim Trotter: Objection, Your Honor! Can we clarify to the court whether the witness is stating opinion or fact?
Judge Chamberlain Haller: This is your opinion?
Mona Lisa Vito: It's a fact!
Vinny Gambini: I find it hard to believe that this kind of information could be ascertained simply by looking at a picture!
Mona Lisa Vito: Would you like me to explain?
Vinny Gambini: I would love to hear this!
Judge Chamberlain Haller: So would I.
Mona Lisa Vito: The car that made these two, equal-length tire marks had positraction. You can't make those marks without positraction, which was not available on the '64 Buick Skylark!
Vinny Gambini: And why not? What is positraction?
Mona Lisa Vito: It's a limited slip differential which distributes power equally to both the right and left tires. The '64 Skylark had a regular differential, which, anyone who's been stuck in the mud in Alabama knows, you step on the gas, one tire spins, the other tire does nothing.
[the jury members nod, with murmurs of "yes," "that's right," etc]
Vinny Gambini: Is that it?
Mona Lisa Vito: No, there's more! You see? When the left tire mark goes up on the curb and the right tire mark stays flat and even? Well, the '64 Skylark had a solid rear axle, so when the left tire would go up on the curb, the right tire would tilt out and ride along its edge. But that didn't happen here. The tire mark stayed flat and even. This car had an independent rear suspension. Now, in the '60's, there were only two other cars made in America that had positraction, and independent rear suspension, and enough power to make these marks. One was the Corvette, which could never be confused with the Buick Skylark. The other had the same body length, height, width, weight, wheel base, and wheel track as the '64 Skylark, and that was the 1963 Pontiac Tempest.
Vinny Gambini: And because both cars were made by GM, were both cars available in metallic mint green paint?
Mona Lisa Vito: They were!
Vinny Gambini: Thank you, Ms. Vito. No more questions. Thank you very, very much.
[kissing her hands]
Vinny Gambini: You've been a lovely, lovely witness.
Vinny Gambini: Mr. Wilbur, how'd you like Ms. Vito's testimony?
George Wilbur: Very impressive.
Vinny Gambini: She's cute too, huh?
George Wilbur: Yes, very.
[laughter]
Judge Chamberlain Haller: Mr. Gambini...
Vinny Gambini: Sorry, Your Honor.
That's ok though. I can wait...
Vinny Gambini: Ms. Vito, it has been argued by me, the defense, that two sets of guys met up at the Sac-O-Suds, at the same time, driving identical metallic mint green 1964 Buick Skylark convertibles. Now, can you tell us by what you see in this picture, if the defense's case holds water?
[Lisa examines the picture]
Vinny Gambini: Ms. Vito, please answer the question: does the defense's case hold water?
Mona Lisa Vito: No! The defense is wrong!
Vinny Gambini: Are you sure?
Mona Lisa Vito: I'm positive.
Vinny Gambini: How could you be so sure?
Mona Lisa Vito: Because there is no way that these tire marks were made by a '64 Buick Skylark convertible. These marks were made by a 1963 Pontiac Tempest.
D.A. Jim Trotter: Objection, Your Honor! Can we clarify to the court whether the witness is stating opinion or fact?
Judge Chamberlain Haller: This is your opinion?
Mona Lisa Vito: It's a fact!
Vinny Gambini: I find it hard to believe that this kind of information could be ascertained simply by looking at a picture!
Mona Lisa Vito: Would you like me to explain?
Vinny Gambini: I would love to hear this!
Judge Chamberlain Haller: So would I.
Mona Lisa Vito: The car that made these two, equal-length tire marks had positraction. You can't make those marks without positraction, which was not available on the '64 Buick Skylark!
Vinny Gambini: And why not? What is positraction?
Mona Lisa Vito: It's a limited slip differential which distributes power equally to both the right and left tires. The '64 Skylark had a regular differential, which, anyone who's been stuck in the mud in Alabama knows, you step on the gas, one tire spins, the other tire does nothing.
[the jury members nod, with murmurs of "yes," "that's right," etc]
Vinny Gambini: Is that it?
Mona Lisa Vito: No, there's more! You see? When the left tire mark goes up on the curb and the right tire mark stays flat and even? Well, the '64 Skylark had a solid rear axle, so when the left tire would go up on the curb, the right tire would tilt out and ride along its edge. But that didn't happen here. The tire mark stayed flat and even. This car had an independent rear suspension. Now, in the '60's, there were only two other cars made in America that had positraction, and independent rear suspension, and enough power to make these marks. One was the Corvette, which could never be confused with the Buick Skylark. The other had the same body length, height, width, weight, wheel base, and wheel track as the '64 Skylark, and that was the 1963 Pontiac Tempest.
Vinny Gambini: And because both cars were made by GM, were both cars available in metallic mint green paint?
Mona Lisa Vito: They were!
Vinny Gambini: Thank you, Ms. Vito. No more questions. Thank you very, very much.
[kissing her hands]
Vinny Gambini: You've been a lovely, lovely witness.
Vinny Gambini: Mr. Wilbur, how'd you like Ms. Vito's testimony?
George Wilbur: Very impressive.
Vinny Gambini: She's cute too, huh?
George Wilbur: Yes, very.
[laughter]
Judge Chamberlain Haller: Mr. Gambini...
Vinny Gambini: Sorry, Your Honor.
Oh, I am so proud of you!!!!!!
Your ammo looks great!
Your well prepared Jas!
Go get em' tiger!
So, so, so very glad you've gotten all your facts in a row, you understand them, and I believe they hold water. I'm picturing Marissa Tomei (ok, your a guy, no offense, but she was great w/the facts- no?) on the witness stand stating exactly why the defense didn't hold water! Someone recite the Buick Skylark quote!
When is your appt...huh, huh, when you going?
-Shell
Your ammo looks great!
Your well prepared Jas!
Go get em' tiger!
So, so, so very glad you've gotten all your facts in a row, you understand them, and I believe they hold water. I'm picturing Marissa Tomei (ok, your a guy, no offense, but she was great w/the facts- no?) on the witness stand stating exactly why the defense didn't hold water! Someone recite the Buick Skylark quote!
When is your appt...huh, huh, when you going?
-Shell
Hi Jason,
please keep us all posted, as you know i have a special interest as I was told by first neuro that I had MS, now second neuro thinks TM (reoccuring) but I believe my second neuro, I too have done loads of research and just went to a diff. Dr this morning to get my numbness checked in my private bits (just to make sure I don't have another underlying prob for that) but I kinda knew I didn't and she also went on the TM theory.. she gave me a copy of everything she had typed in her file (never had that done before) and yes I now know about the cold spots that I asked about before.
Good luck with your appointment and yes they should answer your questions and I agree you wouldn't want to miss out on having drugs that can slow the course of the disease. IF you have a good neuro they should listen to you and answer your questions, make sure you write them all down so you don't forget. I think the lesions are different shaped with TM as well and often with a disease starting as TM then it changes to MS, but perhaps until you get lesions in your brain they won't call it MS. I have no idea.
Thinking of you, I hope they answer all your questions and if they don't well then I agree with Doni change Drs, as my neuro will answer any question with the logic as to why he thinks whatever he says and I like that about him.
Take care,
Cheers,
Udkas.
please keep us all posted, as you know i have a special interest as I was told by first neuro that I had MS, now second neuro thinks TM (reoccuring) but I believe my second neuro, I too have done loads of research and just went to a diff. Dr this morning to get my numbness checked in my private bits (just to make sure I don't have another underlying prob for that) but I kinda knew I didn't and she also went on the TM theory.. she gave me a copy of everything she had typed in her file (never had that done before) and yes I now know about the cold spots that I asked about before.
Good luck with your appointment and yes they should answer your questions and I agree you wouldn't want to miss out on having drugs that can slow the course of the disease. IF you have a good neuro they should listen to you and answer your questions, make sure you write them all down so you don't forget. I think the lesions are different shaped with TM as well and often with a disease starting as TM then it changes to MS, but perhaps until you get lesions in your brain they won't call it MS. I have no idea.
Thinking of you, I hope they answer all your questions and if they don't well then I agree with Doni change Drs, as my neuro will answer any question with the logic as to why he thinks whatever he says and I like that about him.
Take care,
Cheers,
Udkas.
Hi Jason,
Good for you!! Looks like you've done the research. I did the same thing as you and can't find anything that includes all my symptoms, except MS. I'm still not dx, but go to the neuro in Jan, so we'll see what he says.
I agree with Laura, talking to your dr and asking these questions is something you should do. And you are right, you are paying for his services and you have many unanswered questions and want him to explain things and answer your questions.
Good luck and I hope your dr is one who will listen to you and help. If not, maybe it's time to change drs.
Take care,
doni
Good for you!! Looks like you've done the research. I did the same thing as you and can't find anything that includes all my symptoms, except MS. I'm still not dx, but go to the neuro in Jan, so we'll see what he says.
I agree with Laura, talking to your dr and asking these questions is something you should do. And you are right, you are paying for his services and you have many unanswered questions and want him to explain things and answer your questions.
Good luck and I hope your dr is one who will listen to you and help. If not, maybe it's time to change drs.
Take care,
doni
My ultimate goal here is getting treatment. I know that some doctors like to play it safe for various reasons, but playing it safe for me right now if I _do_ have MS is like playing roulette with my life later on. If I do have MS and I start treatment now, then I'll be far better off in terms of not being disabled in the future...
Hi there, yes you do need some answers to all those questions... when you get a Dx..and have more questions as to Why?
I think it's only right to get the answers you need, or if the Drs need to relook at the situation... then it might be they will...or they will give you and answers you need to accept the Dx.. either way...it's part of their job I would think...
If I EVER get a DX... I am sure I will have all sorts of questions...to all the symptoms I have been having over these years...and if I'm not comfortable with the answers...I will ask again..just like you are ...
good luck with getting answers that you need to find your Dx..which ever it is... and treatment to feel better.
take care
wobbly
undx
I think it's only right to get the answers you need, or if the Drs need to relook at the situation... then it might be they will...or they will give you and answers you need to accept the Dx.. either way...it's part of their job I would think...
If I EVER get a DX... I am sure I will have all sorts of questions...to all the symptoms I have been having over these years...and if I'm not comfortable with the answers...I will ask again..just like you are ...
good luck with getting answers that you need to find your Dx..which ever it is... and treatment to feel better.
take care
wobbly
undx
Jason,
The question to ask is what do you have to lose from talking straight with the doctor and requesting answers? From my perspective, you lose nothing and gain either a better understanding of his thinking or you get a second look at what might be going on in your body. You have put together a very good list on TM and the conflicts in your mind - its your body, your life and you deserve to know some answers. Just be aware they might not be the answers you are looking for.
Keep us posted,
Lulu
The question to ask is what do you have to lose from talking straight with the doctor and requesting answers? From my perspective, you lose nothing and gain either a better understanding of his thinking or you get a second look at what might be going on in your body. You have put together a very good list on TM and the conflicts in your mind - its your body, your life and you deserve to know some answers. Just be aware they might not be the answers you are looking for.
Keep us posted,
Lulu
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