Headed back to unknown land

[ch81]

Well it appears that for every 2 steps forward, I find myself taking 3 back. I had my 6 month follow up MRI last week in the middle of a new flare up (that included 2 new symptoms, vertigo and a weird total body vibration feeling, on top of oldies but goodies coming back). My neuro was very positive we would see change and finally be able to move forward with an official diagnosis (this was my 1st attack while with him as my neuro). He has said my symptoms are very suggestive but we needed a change on the MRI to point to a confirmation. (A copy of my records show his desire to wait for confirmation before starting DMDs).

Well the MRI was normal (1.5t w/ ms protocol, compared to mri on same machine/same radiologist 6 months ago). No new lesions, and my 2 small ones are unchanged. Which is positive, that we don't see anything, but scary that we're left with no answers. So he has asked to redo my LP as my 1st one was over a year ago, and had some conflicting findings (1 vile had high cell count, and the other 0, no bands). So its back for an LP I go.

I know we've had a lot of talk on MRIs lately. And my neuro explained to me that since it was unchanged that there is a 95% its not MS, but for those 5% it could be, and that means everything. He said he believes that science has not caught up to me yet, and that he's afraid I'll be lumped in the "your stressed category", though he believes it did not start from stress, but stress does make it exacerbated. He seems really supportive, and very attentive.  Rereading my records, he seems to be listening very well, and considering all options (we've ruled out all mimics).

So here's to hoping there's no post-tap headache. And a big huzzah for my neuro and GP who are a great team, who really have my best interest in mind even if we find ourselves without answers. Let's just hope I get some firm direction where to go from here.

[ch81]

I saw his first answers to your question, it will be interesting to see his follow up. I'm hoping to have a good talk with my neuro after the results of this lp come in. For now, I'm off to see what my CSF can say in this matter...

[Wobbly]

I just wanted to add that the MS specialist I'm seeing said she cannot give me a Dx yet.... didn't say why not... but I had changes on my last MRI... at least one new lesion in the corpus collosum??  

it's so frustrating and confusing why it so hard to get Dxd... I may not have MS... but what is it then?  

[Quixotic1]

Oh, my, I missed the 6 month thing.  I imagined it was a year and I was still unhappy.  Ready to toss out the possibility of MS on the basis of 6 months?  Sheesh!  

I mentioned your case to Dr. Kantor so he can see that my questions are based on real-world dilemmas.  

The high-cell count on the LP really does need looking into.  There are several mimics of MS that involve infections in the brain and spinal cord.  As always the mimics have to be explored thoroughly.

Quix

[ch81]

You wrote what is in the back of my mind while hearing from him, and writing is here... I'll have to watch for Dr. Kantor's reply... I agree. If its been 6 months and no changes on the MRI and I've had no flares in that time, wouldn't it seem likely to not be changed... I will definitely ask him about all this in our next meeting, he did mention waiting longer until my next one so that is a good jumping off point. I'm learning I have to be more proactive and confident in making health care decisions, and not just "going with doctors orders"

Bio-- thanks for the advice... I've got the fiance running to the store for a soda run (we banned keeping it in our home at the new year, guess it'll make an at-home come back for a few days) since I don't drink coffee.

[Quixotic1]

I am still VERY suspicious about this notion that an unchanged MRI negates the diagnosis of MS!  I posed this question to Dr. Kantor yesterday, but he has not answered my question.

We know that MS is a dynamic disease, but I believe that a lot is going on below the resolution of the MRI machines.  I had an MRI that was "static" for almost 3 years and was still diagnosed with MS.  The diagnosis is now quite certain.  But, I also believe that some neuro's have a lot more confidence in this regard than others.

I am glad that you really like and trust this neurologist, but it is ridiculous to suggest that you will fall into the "stress-related" category because an MRI (and a 1.5T at that) hasn't shown visible change.  Your symptoms have, haven't they?  They didn't start from stress?  Then what started them?

If the LP is again negative, then I would hope that your neuro would be up to another opinion about the importance of the MRI which hasn't changed in a certain length of time.  I am not suggesting changing from a doctor that is vested and caring.  But, unless I learn differently, I think he is using a parameter for diagnosis that is not valid.

Good luck with the new LP.  The vast majority go along with a problem.

Quix

[biowham]

Hi, ch81--

Caffeine, caffeine, caffeine, and lying flat on your back for as long as you can--like two days, if you can. I've had what were essentially two LPs, and that regimen worked really well for me both times. No headache, although the third day of the first one, I got upright and a headache threatened, so I was back flat on my back again, mainlining caffeine for another 12 hours.

It's always tough to know what to say to people in limbo, in a way. I mean, do I say, "Hope you get an MS dx!" really cheerfully, or hope it's nothing and goes away and you're a-ok? Really, I hope you get answers, period, from all of this, and I'm glad you've got good docs. Keep them. They're hard to find for some of us.

Bio