Diagnosed then undiagnosed 4 months later

[jumpinjiminy]

Don't you love the drama? Here's what this MS doc had to tell me: I don't know what caused your lesions, when they developed, don't have a history on you, you haven't had enough MRIs, there weren't enough views, the radiologist wasn't descriptive enough mentioning their locations, there is nothing on these MRIs that would cause a vision problem, people with MS don't even know they have vision problems - they can't tell, I don't know what you have, but it isn't MS. If the meds are helping, it could be a placebo reaction or maybe it's helping something else, but it there's no way to tell if it's helping stop lesion development from these two MRIs. Mild disease isn't worth treating with expensive meds. They aren't designed to make you feel better, get rid of symptoms or anything other than slow down lesion development on the MRIs. That's what they're for, and you don't have enough to treat.

Oh wait, I forgot the real fun part: The LP results are worthless (greater than 5 bands not in serum). We don't even look at those anymore. They're meaningless. Many other conditions can cause those. They aren't specific to MS.

Here are the questions he asked me for this visit: Why did your doctor send you here? Why did he order this MRI?

No exam, no history taking, nothing. The next time somebody wants me to see an MS doc, I'm just going to ask them to send my MRI in my place. *sigh* And I really was feeling better on the meds.

[jumpinjiminy]

Thank you, Kyle. It was a long road. I'm glad to finally be getting a treatment that works. Don't let anyone tell you that mild MS isn't worth treating. It most definitely is. I have so much more energy, mental and physical, than I did without treatment, and that means a lot to my husband and kids. It also allows me the chance to take care of myself better.

It's hard to listen to a doc who tells you that your situation isn't worth treating with these expensive drugs, that it doesn't matter how much better you feel on it, that's not what the meds were designed to do. That difference in quality of life is huge for me. I'm not sure who programs these people to think this way, but it's bad programming that needs tossed.

[kwarendorf]

HI JJ

THanks for checking back in. I'm glad you have some answers and have found the right doc and the right med. :-)

Kyle

[jumpinjiminy]

It's been almost a year since this happened, and I'm now with an MS doc who agreed it was MS. The low lesion load still tosses in a question mark, but the LP results indicate 'something is definitely targeting the CNS with 5+ Obands.' Still taking Copaxone and getting good results with that. I tried a short course of Tecfidera and had side effects so bad I had to go off within two weeks.

So how is your cancer treatment going, Alex? Having a doc you can trust and communicate openly with makes a big difference.

[HVAC]

I am so sorry. Find a better doctor and things will get better. I was realizing how happy I am today with my Cancer Hospital and Doctor and how bad the other one was not. I would not be here if I had stayed with the first Doctor. I would be dead. Now I actually like going for treatments. They had a full orchestra play in the lobby for us today. People are nice and they know how to do their jobs.

Alex

[jumpinjiminy]

Thank you for the support. I've been tested for all of the mimics several times, all negative. This is the only thing showing up. The referring neurologist who diagnosed claims he's never heard of tossing out CSF results in his life. But still, now the dx is up in the air and a medication I'm on that IS working on the symptoms might be discontinued.

Honestly, there are times I want to call my insurance company and ask them to drop payment for these doctors. I never realized how many of them aren't doing their jobs, or treating patients abusively, until going through this. It's maddening.

[HVAC]

Sounds like my second Neurologist. I got a third and finally a 4rth Neurologist and a diagnosis which has stuck. I am so sorry.

Alex

[Jennagreen]

I just went through a whole battery of rule-out tests because of a positive spinal tap. Yes other things can cause the bands, but there are tests for them, and you should be tested for them. If they are all negative (as mine were) the most likely cause is MS, especially if you have other symptoms.

[essdipity]

I disagree about matching lesions and symptoms. This is an exercise that can drive you nuts, and even good neuros often avoid it. The Health Pages have a good bit to say on this subject, for those who haven't looked into this great resource. See link at bottom of screen.

Discounting a positive LP is just crazy, and is grounds for dismissal of neuro. He should go directly to jail, not passing go or collecting $200.

ess

[Poppy7402]

Maybe your doctor went to this website:

http://emedicine.medscape.com/article/342254-overview

"Cerebrospinal fluid (CSF) analysis for oligoclonal banding or immunoglobulin G (IgG) levels is no longer routine in the investigation of MS, although this test may be of use when MRI is unavailable or MRI findings are nondiagnostic.[4] "

Whatever he did, I'd be looking for another doctor.

Poppy

[SarahL2491]

I'm with Kyle on his whole answer!

[kwarendorf]

CSF results are still very much included in the McDonald Criteria. The following is lifted from the criteria as diplayed on the NCBI website )http://www.ncbi.nlm.nih.gov/books/NBK48930/)

"Positive CSF: oligoclonal bands detected by established methods, preferably isoelectric focusing, different from any such bands in serum; or by a raised IgG index."

I counted 7 references to CSF results...

"Why not ask specifically if the patient has x symptom that would match up with x lesion?"

In a court room I think they call this leading the witness :-) If this dope provided a symptom, some might be inclined to says "Yes! I have that!" even if they don't.

This guy sounds like a complete loser. I'd dump him. :-)

Kyle

[jumpinjiminy]

Actually, he's a younger one. Has anyone else been told their positive LP is meaningless? All of those other conditions have been ruled out. Since when did LP results disappear from the McDonald criteria, or aren't they used anymore as lab supported evidence for diagnosis?

Another thing I've noticed, if you ask three neurologists what x lesion in x location would affect, you'll get three different answers. It's kind of hard for the symptoms to match up with the MRI when every neurologist reads them differently. And how can they tell your history isn't matching up with the MRIs if they've not asked any questions to elicit such information?

I've been around enough of these docs to know the last thing they want to hear is a patient rattling off a long list of symptoms the developed over the course of time. Why not ask specifically if the patient has x symptom that would match up with x lesion? Oh, I forgot, because we're all lazy slugs imagining things are wrong with our bodies so we can file for the dole in order to live comfortably without having to work for a living. If they do mention x symptom from x lesion, the patient will simply agree and do more faking, or worse, mentally will themselves to have x symptom! We all love feeling like hell daily and revel in the attention of our friends and family running for the hills!

[supermum_ms]

Well he's semi right about DMD's.....

"They aren't designed to make you feel better, get rid of symptoms or anything other than slow down lesion development..."

Very true and by using his own logic, that is exactly why treating MS as early as possible is internationally recommended, the best long term out come is to slow down the disease and therefore minimises the 'persons' level of disability!

I suspect this guy is an old school lesion counter and if so he's way behind the rest of his peers.

Hugs...........JJ
  

[SarahL2491]

I agree with CheyTag, if I went back to one of the idiot neuro's who told me I had alzheimers, I'd hear much of the same thing.  Which is why I won't leave the one I have!  

[CheyTag]

Oh you poor thing... just stay with the doc who originally dx you... that's what my neuro is doing. He's treating me as he didn't like the only available dr from the MS clinic... she must be a lot like this one you've run into... just go back to your neuro explain what an a $$ this guy was and TELL your neuro how much better you felt... it can't hurt. Good luck...