I may never get an answer! re Dr Kantor on MRI

[Udkas]

After reading Dr Kantor's response to a question on repeated clear MRI on T3 machines on the "Ask A Dr Forum" I have decided that I might never get an answer!  This FRUSTRATES the life out of me!!!  Dr Kantor stated that if you have repeat MRI on T3 machines and a clear LP you would almost definately beable to rule out MS.

I don't think my neuro thinks I have MS, he believes I have TM but I am sure the protocol for diagnosing them would be the same in regard to lesions on MRI and I don't have any.  My LP 13 years ago was normal.  My last two MRI have been done on a T3 machine.  I have an appointment to have another MRI on Wed with the Gad (I almost don't want to go now) and a LP scheduled for the following week.

I don't really want to have a horrible disease, it would be nice for them to tell me it's anxiety or something that is treatable but I DO WANT AN ANSWER for my problems that are not NORMAL but i seem to yield normal results.

DOES ANYONE KNOW if TM is the same in regards to diagnosis by MRI, can you have TM and not ever show up on MRI??????

Thanks,
Udkas

[Udkas]

Hi Dr Kantor,

thank you for your reply, I am very grateful for the information that you have passed on to me about the MRI machine. It is interesting info and makes sense.

I had an LP done on Wednesday and my neurologist spent a lot of time talking to me about diagnosis etc. and basically echoed what you have said.

I guess when you know there is "something not quite right" you like a reason for it, I have not progressed much in the last 13 years.  I feel reassured that people or doctors still listen to what a patient has to say and what they find on clinical exam.  I still hope the LP yields some type of result but if it doesn't I will just accept the answer I have been given and be grateful that I haven't progressed to a stage that would require further medical intervention etc.

Thanks again

Udkas.

[Dr. Daniel Kantor, MD]

You should never feel that anything haviving to do with your healthcare is "pointless."

As I have written in the Q&A forum, MRIs of the spine are only right 50-85% of the time and the newer 3 Tesla machines aren't necessarily better for two reasons:

1.  There is a high signal but also a lot of "noise" with higher strength magnets and algorithms are catching up with the hardware to be able to make the spinal cord easier to see.

2. If you go to a commercial 3T machine and they put you through the MRI faster than before, then the quality of the image is closer to 1.5 T. They should be running the test for as long as they did in the past.

Transverse Myelitis is a clinical diagnosis and may be diagnosed with a negative MRI because it is unlike in MS in that the attack on the central nervous system is usually a one-time thing.

[Udkas]

Hi thanks for responding,

I was feeling a tad down, I had a bad day with my symptoms and then felt that perhaps I am just a fruitloop as nothing is showing up on my MRI.  I know I should be grateful for a clear MRI but I just want some sort of diagnosis for what I am experiencing, I need things in black and white and I am afraid I won't get it. I guess if I get a diagnosis I might be able to deal with it and move on, but sometimes I feel a bit consumed lately by trying to analyse my symptoms.

I know my neuro believes it's neurological and he told me in his opinion TM.  He hasn't alterd his opinion even with the clear MRI scans but after reading Dr Kantors post it made me wonder if everything was pointless.

I will go for my MRI with the gadolinium on Wed.  I am not expecting it to show anything, I am having my thoracic and cervical done (not my brain). My neuro likes to see my films himself he said radiologists can make mistakes!

As for my LP that is the following Wednesday and yep my last one was 13 years ago, so maybe this time it might give some sort of result.  I hope so.  I was excited about it but now I'm feeling a bit flat. Well a lot flat!!

From my reading/research you need to base diagnosis of TM on symptoms/findings and certain criteria on findings, I meet that bit and then there is the lesion issue, some sites say if compression etc. has been ruled out a patient is assumed to have TM, so I don't know.

Thank you for the URL to those sites I will go have a look tomorrow. I guess I'm just being childish not wanting to go, just frustrated and afraid I won't get any closer to an answer.

Thank you, so very much I appreciated people replying to this post...

[Quixotic1]

Did you post your question in that same thread to Dr. Kantor?  He will sometimes respond to a question by someone later on if the question is on-topic.  Just ask if TM can be reliably diagnosed without a spine lesion.

Quix

[Quixotic1]

One thing to consider is that the lesion (usually felt to be just one) in TM (Transverse Myelitis) is typically large.  It often extends a fair distance (like 2/3) across the cord, so it should be visible on MRI.

Beyond that I would have to go read those articles that Julie gave you.

Honestly I can't answer your question.

Quix

[wonko]

There are so many things that can mimic MS!  If you know something is wrong, don't give up looking.

Here is an article that lists about 100 conditions that can mimic MS:

http://www.neurology.wisc.edu/publications/07_pubs/Neuro_2.pdf

[Sarahsmom46]

I think what Dr. K wrote was technically correct based on what science knows at this particular time.  If I were in your situation, and in a big way I actually am in a very similar situation except that my brain MRI did show lesions (not too many) I would opt to go through the MRI and LP again.  Hopefully the results will show the doctors what is really going on with you. If the LP was normal 13 years ago, it just may show something now especially with all that you have going through.

What have you learned so far about TM?  I'm sure you have done some research on it as I have since that was my dx last May.  TM has been written up pretty extensively in medical articles as you have probably already learned. The connection between MS and TM has also been written up as well. I am going to forward a few articles that have helped me understand this connection and I hope it might help you too.  

I found one on Brain MRIs and TM that you might want to take a look at http://scamparoo.wordpress.com/2008/06/03/acute-transverse-myelitis-with-normal-brain-mri/

Another one http://www.myelitis.org/newsletters/newsletter4-2-02.htm "TM and MS Connection".

One more on "Brain MRI in TM versus MS"   http://www3.interscience.wiley.com/journal/119135011/abstract?CRETRY=1&SRETRY=0

Take care Udkas and by all means, don't give up.

Julie

[Sunnytoday]

Hey there. Don't give up if you believe something is wrong, but be open to more than one answer or diagnosis. If your doctor has recommended the MRI, please, do go.

Another suggestion, a second opion is ok. And be sure to have the MRI film or cd looked at and enterpreted by the neurologist himself. In my personal case, I had a "clear" MRI according to a radiologist, and a neurologist reviewed the film and spotted lesions and had me rescanned at a different facility which then the different machines and more important radiologist and neurologist picked up the lesion on that last MRI. This of course, was my case, and may not happen to everyone.

Also, a lot could have changed in 13 years both in the medical world and in your body for your spinal tap. Be sure to have it done by someone you trust.. and be sure that they have the correct orders that ask for everything that you need tested in that spinal fluid. I didn't. oops. So, I may need a repeat one this year.

Have a blessed day, and remember this forum is here for you.
Don't give up, and always look to the future, and enjoy ever moment.
(((hugs)))
~Sunnytoday~