[Gazelle]

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!

[lady_express_44]

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

[greta]

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.

[Gazelle]

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).

[NurseNancy]

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.

[tovaxin_lab_rat]

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!

[weegot5kiz]

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

[sunnyday]

hi gazzelle,
I can understand just how you feel and the frustration with the medics you are seeing where one says one thing and another says another, then they are changing their minds about the dx...it sends you crazy i know.

Please read my story 'can anybody help me please' and 'ive made a view point break through'..My story sounds similar to yours,
I too am now in what i believe is called a 'limbo state' without a sticking dx.

I have 3 lessions showing on mri scan that seem to have now pailed into insignificance from what neurologists are saying (or not saying) as they are 'still only 3' my neurologist said after a second mri was unchanged and my dx has gone from ms to fybromyalgia,even though my legs are heavy after a few minutes walking then i can't walk anymore, but no one is taking any notice of that really and i have been having awful symptoms.

I know just what you are going through so maybe we could keep each other posted.

I have been chasing a dx which had been doing my head in to say the least, but i have now decided i wont be letting the medics do that to me anymore and have found a much better way to be about all this. After all it is them who are making me and you feel worse in many ways, so dont allow them to get to you.

Calmly go about a little research so you know whats what and surround yourself with people that lift you up and not pull you down, that makes all the difference!

You are right to go with your gut instinct on to what you feel is wrong, as you are the one it is happening to, only you know how you feel,at some point the doctors/neurologists will get this too.

You seem like you have a good attitude and humour helps, you are not alone in this, I have had great comfort and support since posting on this site and that has given me strength in itself.

I realise getting a dx ends the wondering but that wont cure me in itself so i am searching out all that which will make me feel better, hey there may be something out there that will cure me!

Stay strong and positive
Much love and best wishes x

[Gazelle]

Originally Posted by NurseNancy

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

Hey, That was really good, Judy! Uh oh, though. You're starting to sound like me.

Dunno about the drs. I was ok from 2005 until 2007 when the neuro who dx'd me was consistent. It was only after he left and I went to this new place where the other neuro decided on TM. That upset the entire applecart--again. And you remember the saga with Dr. Flip Flop, I'm sure. Sheesh....

Liver lesion? I didn't press it with the neuro. Not his area, IMO, and he probably would have told me to see my fam doc, which is ok. I delayed with picking up the CT report (usually get radiology reports within days of the scan) so didn't see it quickly. The fam doc is ok. He does listen even if he doesn't have too much of a warm and fuzzy feel about him. So I'll call and ask today. The office is good. They'll ask him and he or someone will get back to me pretty quickly. Keep ya posted on the LLL (little liver lesion).

Originally Posted by Av8rgirl

But you do! And I will watch you eat all the food at IHOP...I will nibble on what's left over! (((Starve--then *I* get the tickets free and clear!)))

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!

As if I COULD forget that fact. Drat it all.....

Originally Posted by weegot5kiz

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

I've actually suggested doing that before, but I am really not ready for more school than that which I have been through. (At least not right now.)
Thanks. I hope the new guy is too. But they have FIRE ANTS in Texas, even if a couple of friends live there (one in McAllen, and two in Houston)! I stood on a fire ant mound in the dark accidentally once. Nope. Not fun. OUCH!!

Originally Posted by sunnyday

...it sends you crazy i know.

After all it is them who are making me and you feel worse in many ways, so dont allow them to get to you.

Calmly go about a little research so you know whats what and surround yourself with people that lift you up and not pull you down, that makes all the difference!

You are right to go with your gut instinct on to what you feel is wrong, as you are the one it is happening to, only you know how you feel,at some point the doctors/neurologists will get this too.

You seem like you have a good attitude and humour helps

SD, yeah it can make you crazy. I let it do that to me in 2003 when I couldn't get answers from anyone. Now it's just a supreme annoyance.

Oh you have no idea how much research I did in the beginning: neurology text books, internet, medical books, etc. I drove people crazy on a different message board with all my questions--hard ones. Went to my family doc in 2003 and went in with a sheaf of papers and said, "Here, I have these sx and these things will help. I've been doing this for 6 months without relief, I need some. HELP!" He said, "Gee, I hate unprepared patients." He's a good guy, just wish I lived by him still. He helped--greatly. Then I went back to my Dr. Flip Flop and said, "In your face. Now you gonna do something to make me feel better?"

Believe me, I got VERY down in October-December of 2003 when I'd been going through an "event" since the beginning of February and was still not feeling better. I realized that you just can't let it seriously get to you.

It does, like this disease, but..... well, I am NEVER going to let it drag me down the way it did in 2003. EVER AGAIN.

Persistence is a wonderful thang. I now have a psych doc who says it's NOT all in my head and a doc who says it's partly in my head (lesion) but I'm not nuts, so half the battle's won. Don't need a firm dx, just with people would stick with one thing or another. It makes filling out paperwork and talking to people easier.

Lemme see...... if it's February, it must be TM

Um.... if it's March, it must be..... oh well, I guess I really don't have anything wrong with me and shouldn't take meds

Wow, it's September...... I have MS!

Nope, it's December....... I have TM

<shuffling paper>

Wait. I gotta find when I last had TM. Or was that MS. No, wait.... it was nothing wrong with me......

Maybe I'll just fill in that I have bronchitis and let them figure it out. Everyone gets a brain MRI w/ and w/o contrast for bronchitis, right?


Hang in there, SD. I'm glad you're in a better place too with your head. Gotta keep a good attitude and even better medical records. That became my motto in 2003.

[Becca44]

Originally Posted by greta

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.

Count me in for Guinnesses and breakfast!!