Had a so so experience in January when I went to the lovely large medical facility which is less than a 2 hour drive from my place. Had an awful experience when I went back in February for an LP (OUCH!!!!). And this time, I had a great experience with a totally different neuro.

I told him why I was there to see him and that I had thought I was going to see a "treating neurologist" when I was there in January, but that wasn't how it turned out--I was only there for a consult, even though I'd told everyone who would listen to me that I was there for a "treating neurologist." Gave him the Reader's Digest condensed version and said, "End of saga." He said, "Well, the saga is going to continue but we'll get to that later." And we went on to discuss my MRIs, CT, and test results.

He actually listens! He does. And he was great. So rather than just being told (after being dx'd in 2005 from 2 lesions on my brain etc.) that I only had transverse myelitis, he now says "possible/probable MS." The first neuro there didn't see ANY lesions on my brain MRI from 2005, but this guy did. He saw one. I'll take that. So 2 out of 3 neuros have now seen lesions. I'm going with the majority on this.

He affirmed that my presentation of the episode I had in 2003 was not a typical presentation of TM and that it was much more like MS than anything. Wants to f/u with me every 4 months and if no new lesions at the end of a year, switch me to every 6 months. He'll f/u for 5 years like that. If nothing changes, he said MS is really out of the picture, but he said that in his experience with what I've had so far and what I have that 60-75% of patients will be confirmed with MS.

Now the saga part: he got recruited by another medical facility in Texas and is going there, so he won't be my neuro at this facility. But he IS going to hook me up with someone who he thinks will be a "fit" with me (he said he wants to do that with all his patients). So I'm going to end up f/u with his partner at the facility. I'm sad cuz this guy was great as far as communicating, his sense of humor, his bedside manner, but glad that he's going to put me with someone who has the same philosophy that he does.

I'm not changing my "dx" from MS to no MS. It makes no sense. Who wants to explain that all the time to people? As far as I'm concerned, it is MS until it's not. That'll make it easier. Besides, I could be heading for a tie breaker on the MRI interpretation. OR I could be heading toward a "I see more than one lesion" as my old neuro (an MS specialist who is now at the Cleveland Clinic) said he saw.

Now all I have to do is talk to my regular doc about the 7 mm liver lesion they found on CT scan which I didn't hear squat from him about. If you think that I'm going to just let THAT one sit, nuh uh!

So I've run the gamut. Neuro who flip flopped between dx/meds, no dx/no meds, dx/no meds. Neuro (the floppy one's partner) who saw lesions and w/my thoracic spine lesion gave me dx in 2005. Neuro who didn't see any lesions (thought the two in the corpus callosum he saw on the 2008 MRI were probably artifact) and said only TM. And Neuro who saw one lesion on the 2005 MRI, no comment on the 2008 MRI, possible/probable MS, and we'll f/u and if you're comfortable w/it not give you meds.

Let's see what neuro # 5 says when I see him in a few months. LOL At this rate, I'm better off picking a dx myself and sticking with it than changing it every few months. Yikes!

I think I recall your story on "Joe's" TM thread, and I did not believe that that neuro was right about his diagnosis of TM ~ well at least not ACUTE Transverse Myelitis. Your experience was not anything like what everyone with TM has gone through that I've talked to anyway.

Bear in mind that many cases of TM end up being MS-induced TM in the long run anyway . . .

I only had 3 very small brain lesions after 12 yrs with this disease, Gazelle. I consider myself very lucky in that regard (less damage). I probably would have gotten the dx anyway after the 2nd TM attack (or 3rd flare-up of my spinal lesions), but those 3 itty-bitty brain lesions may have cemented the dx for me more quickly.

There doesn't seem to be much doubt that you have MS, especially with those spinal lesions. There are very, very few diseases with spinal lesions.

Cherie

Dr. Greta thinks that your problem is really just an inability to properly absorb Guinnness. My Rx: A trip to the homeland to drink from the source, drink two and let's go have breakfast in the morning (at an IHOP preferably).

I'm glad it was a good visit and that someone has a plan.

I'm all about Dr. Greta's therapy. We should test the therapy out sometime!

And if that lesion on the liver turns out to be something, well, I'm definitely following you to Italy so I can protect you from bad wine and food.


Cherie, thanks. That's kind of where my head is at too. I'm just tired of spinning around all the time with this, especially since it's gone on since 2003.

The weird thing is either my first LP results were wrong (and there was no O banding as reported--my neuro never said how many, just that there were multiple bands) OR it was right and I did have bands and they disappeared. Which they don't really tend to do in MS from what I've read. I did have them only in my CSF as opposed to serum and had the elevated IgG index too. But I'm just going to throw my hands up and surrender to an "I don't have bands right now" syndrome, cuz I don't according to the latest test (Feb. this year).

holy cascades of batman and robin! (i made that up btw)
what a litany of stories you've gotten.
how can you see so many drs and no one can give you a straight answer?

i don't like the sound of a liver lesion either. and why didn't your dr tell you this? more

i hope you can this all resolved by the end of the yr.

I am with Greta. Guinness solves everything! Except I don't drink Guinness. But you do! And I will watch you eat all the food at IHOP...I will nibble on what's left over!

So if you don't have MS, what do you have? Shall we vote? Hmmm...never mind. That's another story for another time. I think we'll keep you around anyway, sort of like DM. You're good for the entertainment value while you wait for those lesions to grow up and decide what they want to be! LMOA!

Yeah yeah I know...go away. Remember, I have the tickets!

Count me in for Guinnesses and breakfast!!

at this rate you could go to school get your doctrine and DX yourself, I hope this new doc is as good as the one you saw yesterday, sorry he is moving any chance of moving to texas too? good luck with the neuro situation

Yeah, let's send her back to school! LMOA!!

No more school? you sure?

Oh yeah, they do have fire ants in Texas! Nasty nasty nasty!




but for you adverterous people out there, there is a line of astronaut food and you can get freeze dried fire ants!! See, you can get almost anything on the internet and I was just looking for a picture of fire ants for a response to Gazelle's post!!! LMOA!!!

Beccaroni, I KNEW I liked you!


No, not really. An art degree would be nice too.


Hmmm.... are those people who shamelessly promote themselves?

And freeze dried fire ants? Now THERE's a snack that might be Atkins friendly, but it's certainly NOT on my list of snacks to actively seek out. I've already had the anchovies and candied almonds snack adventure with a board buddy.....