My gosh! What an ordeal!

I was dx with my MRI alone - guess it had enough lesions to compensate for not having an LP.

I had made up my mind beforehand, though, that I was NOT going to have an LP regardless. My cousin had one years ago - probably more than 20 years ago - and something went wrong but she has had problems because of it since. I need to find out exactly what happened but I can remember my Mom talking about it.

Luckily I didn't need one but I've already told my Neuro that I don't want one regardless of the situation.

I'm so glad that they forced you to take it there where the "experts" are vice at home. That totally sucks. Good news is that it's over. Please tell me that they took blood at the same time???

Hope you're staying flat and guzzling mountain dew! Take good care of you.

River, I'm SO glad you can't hear me right now because I'm laughing just thinking about the fluid squirting all over, although it sounds like it was just as yucky a procedure as mine. Ain't all of us who've had this much fun in a S P E C I A L club? Hmm... I think we should invite those docs to a special club function.

Cayo, GULP! I do NOT blame you one bit for grabbing your baby and leaving. That's horrible. I'm sure your daughter remembers that and not fondly. Ugh.... I don't like medical professionals who can't seem to admit that they're out of their league and having trouble with a certain patient. It happens. Been there, done that--and been woman enough to admit it for the patient's sake. Luckily for us, the good medical professionals far outweigh the bad ones with this issue.

Brain, I like your thinking. You're just as evil as I am!

Sally and Fin (and Greta), the reason why he wants to repeat tests is because he says that some of the ones I had in 2003 are "suspect." For example, the LP I had in June 2003 showed a lab report of "suggests presence of oligoclonal banding." My neuro at the time chose to relate to me that I had an elevated IgG index (0.72, RBC ), glucose 57, protein 36) and oligoclonal banding. My blood serum at the time was clean. A normal LP result would indicate the number of bands and mine didn't. Consequently, he doesn't believe the results and thinks that the test may have been done improperly. So we repeat the LP and the blood serum (yes, Greta, they took blood at the same time--I would have been on the phone to the neuro who saw me there if they hadn't done it because then it wouldn't have been a valid test.)

Well, I had abnormal SSEPs too with my left side more abnormal than my right side in my lower extremities. He's not making me repeat them, thank goodness because I had increased symptoms for two days after that test, but his clinical notes say that my July 2003 SSEPs showed "prolonged waveforms from bilateral legs (though perhaps with some technical difficulties)." He didn't discount the results, but the "technical difficulties" in itself is damning enough when you take his suspicion of my other tests to indicate that he may not believe them.

He also wants me to have repeat neuropsych testing done because any change in cognitive function will be more apparent over time. I agree with that. So I am to go back to the same neuropsych that I saw in 2003 and have the whole bloomin' battery of tests (oh what fun ) run again. Um... ok, but I hate to say it that I'll probably remember a whole bunch of things from the first time as that happens when I've read things or done test questions--I tend to remember the answers to things or the test questions if I see them again. Guess I have a bit of a photographic memory in me, but I can't recall squat otherwise. Ask me what I had for lunch yesterday and I probably can't recall. But written stuff...I've always had a pretty good recall that I've read something somewhere and recognize it again. It's why I can't really read books over again more than 10 years or so apart.

I'm also to go back for repeat VEPs, which doesn't bother me. Hey, I can stare at a checkerboard pattern again without any problems. My first test was normal, but I guess he wants to see if there was any optic nerve involvement since 2003. To my knowledge, I've never had ON. I have had bouts of nystagmus, which has made viewing computer screens loads of fun at times, but when I had eye pain once and took myself off for visual field testing, there was no indication that my optic nerve was having problems and my tests were normal. Not one neuro has commented about my optic nerve looking funny on visual examination.

Bottom line is that the neuro at Hopkins isn't convinced that I have MS. He thinks that I may have had TM in 2003 rather than it being MS. Part of the reason for that is that my brain MRI doesn't really show (??) lesions and it should have by now if I have MS.

Interestingly enough, he said that although my prior MRIs of my brain were normal, my latest one in December 2007 (w/ & w/o contrast) was "essentially normal. This is a better quality study than the other ones [he] was able to review, particularly with good saggital imaging to evaluate the corpus callosum, and there may be a T2 bright lesion in the anterior corpus callosum and a T2 dark lesion in the posterior corpus callosum, but these are very subtle, may be artifactual, and there are no other lesions, such as Dawson's fingers or subcortical lesions." The radiologist read the MRI as normal. I find it interesting that he sees what might be two lesions, one bright and one dark, but thinks that both could be artifact. Then again, I read too much into things sometimes with these reports. (I once asked my old neuro in jest when my brain MRI report said "no significant abnormalities" if that meant that I had insignificant abnormalities and what exactly WERE insignificant abnormalities? ) Oh, and I know that not everyone with MS has Dawson's fingers and subcortical lesions, so that really isn't a measurement of whether or not those two things he thinks might be there are lesions or not and don't define the MS vs. TM problem.

Ok, so I ain't got a holey brain. I can live with that. But if those are actually there, and my old neuro saw lesions in 2005 (with what this neuro would consider poorer quality imaging) and dx'd me definitively, then what's going on? Docs can disagree on whether or not lesions are lesions and can read MRI results differently, so who do you believe? I'm thinking I should go with the guy from Hopkins, but my old neuro's at the Cleveland Clinic. Hmmm..... Um... 6 to 1, half-dozen to the other comes to mind on this one.

And therein lies the rub--MS or TM?

So he says that even if my LP comes back with banding and nothing in the serum and even if my VEPs show optic nerve involvement that it might not change his opinion that it is TM instead of MS. Makes me feel like I'm nuts for going for repeat testing. After all, if it's not going to make him change his mind or lean to the MS side of things, what's the point?

Also, my neuropsych testing in 2003 indicated that some of the cognitive problems that I was having were "probably" related to depression rather than a neurological problem. The neuropsych agreed that I was depressed at the time and said I should be and wouldn't have been normal if I wasn't. After all, I had the testing in August 2003 or September 2003. I'd been getting sicker and sicker since February and no one was doing anything to help me with symptoms--so I had pain, fatigue, paresthesia, tremor, etc. A very good friend of mine (age 36) had non-Hodgkins lymphoma and I was at the hospital with him and his wife and his 4 kids when his brain started herniating and we had to take him off life support--I talked his wife into doing that and stayed for over 10 hours while he died. Plus, I had hit and killed a dog (and I'm a huge animal lover). People were starting to take decisions away from me (by making decisions about what I could and couldn't do physically) without consulting me first to find out what I thought I could do. So hey, I don't see a problem with why I was depressed! It was friggin' situational!!! And the neuropsych admitted that to me. But he didn't put that in his report. Lovely.....

So now I have to go to a shrink (a psychiatrist) too to rule out depressive aspects of fatigue. Did that today. He said that based on my description of the fatigue it sounds like what I have isn't related to depression, that it's neurological. But I'm going to go back and talk to him some more and explore that a bit just to make sure of that. Can't do that all in one session--it's too much.

And the neuro from Hopkins told me that there is a statistically higher incidence of depression and anxiety in patients with TM than in the general population. It also is the same for those with MS. They think that these diseases operate on the neurotransmitters in the brain, which would explain a higher incidence. Geez, I know I can't handle stress the way I used to before I came down with this lovely illness. I used to be a stress junkie and it gets to me so early now and increases all my symptoms. Whee!

So there's the short answer to your very good question. Aren't you really, really glad you asked?

Hi Sally! I had 2 lp's for totally different reasons. One was for dx and the other was to check for meningitis when I was really sick long ago.

your story is AWFUL.
i wonder if that "dr" was inexperienced and they didn't tell you that.

for anyone reading this IMHO,
anyone who goes for an LP should have it done under floroscopy.
the usual position is laying flat on your stomach.

the dr should be a radiologist and/or experienced in doing the procedure.

i can't stress enuf that you SHOULD ASK Q's. interview the center, hospital, dr. if you're not happy with the answers STOP. you don't have to submit to anything.

and, make sure that they are going to run the right tests. some folks have had lp's only to find out they didn't test for O-bands. handy to have your dr's orders on a prescription sheet to give to the dr doing the test.

sheeh, this makes me so angry for what you went thru.

Judy,

Thanks. Good advice for people.

I began to suspect that the guy was lying to me when he told me he'd done well over 100 LPs. I think that if he actually did, he did them on the LPs through the hole in the middle where the spindle went. At least he didn't practice on 45s. Seriously, how do you check to see if someone's experienced when they say they are unless it's afterwards? There was no way that I was going to let a med student do it.

*sigh* The only thing I'm happy about is that it's over, I'm nearly back to normal, and I'll get results.

Gazelle, my eyes are not working properly this morning so I apologize. What IS that in your avatar? I'm sure it's something quite obvious but my eyes are just not seein' it!

It looks like a bald eagle to me.

Or a hairy chicken!

HereKitty, it's a Bald Eagle.

Ding! Ding! Ding! Holly wins the prize and Flygurl and Greta get the prize for being smart aleks!

It's not the avatar that I would ordinarily have used, but I seem to have lost the majority of my avatar files I had on a hard drive that decided to stop working.