New neuro doesn't think its MS - Multiple Sclerosis Message Board

lilc · 06-13-2006, 07:11 PM

So all my evoked potentials are still normal. The records from my LP last August are confusing, one sheet says no oligoclonal bands, another says greater than 5 oligoclonal bands. My brain lesions are quite small, even though there were several.
I've brought this up on this board before, and I'm pretty sure I discussed it with my first neuro. 20+ years ago I did some heavy cocaine and meth use for a period of several months. New neuro thinks that may be causing my sx (though I got the impression he hasn't had much experience with drug users - he kept asking how cocaine makes you feel).
I couldn't sit down and cry when I left the appt like I wanted to, had to go back to work. Don't think I can deal with another LP within a year of the first. Don't want to do the VEP and P300, either. At least he didn't pull my Copax rx.
I haven't enjoyed rollercoasters in MANY, MANY years, not interested in getting back on this particular ride again...Just venting, I guess.

How ironic. Just went in the fridge and realized I forgot to do my shot today.

StephanieAnne · 06-13-2006, 07:37 PM

Hi lilc

Oh dear, so how come you went to a new neuro? and does he have copies of all your records from the old neuro? I am sure he does, I'm thinking that you are a pretty efficient person

so how does he explain the L'hermittes? and the balance problems? and the exhaustion?

The sins of our youth, that was me too, just a few recreational drugs, and I often wonder if that contributes to my MS, amd maybe it contributes to yours along with a bunch of other stuff, like you had mono? and what about artitifcial sweetners, use any of them? and then there are enviromental concerns, your MS like mine and like alot of other people maybe is brought on by years of stuff we ingested like food wise who knows what is in processed foods, and did they ever spray for mosquitoes in your neighborhood when you were a kid? [maybe that is just a NYS thing} we chased the trucks on our bikes,

what did we know back then, what did anyone know back then

How about telling your new neuro, that maybe it's not MS, but things seem to be moving quite nice now, and the drugs must be working, so lets let the sleeping dog lay? I would not want to go thru all those tests again, explain all that to him. Is he a young DR? I sometimes think the young dr's want to cure the world of all it's ills

Sleep on this new info, let your brain think about it and see how you feel in the AM. Remember YOU ARE IN CHARGE!!!!! and you may vent here anytime you want!

duttin · 06-13-2006, 09:40 PM

Lilc,

So sorry to hear about your ordeal.

How much expeience does this neuro have with MS?

Everything I have read on the web and at neuro's office MS is a diagnosis of exclusion and your previous neuro seemed to pretty up front and on top of things.

You don't have to have positive evoked potentals to have MS.What about the rest of the test,Romberg,babsinski,hyper or hyporeflex's?

Have you read the radiologist report yourself?

I checked my lumbar puncture results and one section for o-bands is for blood serum and ond is spinal fluid.

I had used recreational drugs during my youth,but neuro explained it was out of my system by now.Did he explain what the lesions were? Or how he come to his conclusion?

I'd kick him to the curb and find a neuro that dealt primarily with MS.This your life and how dare a neuro mess with it.Obviously the copaxone is helping.

Have a good cry,it helps at times,take some time to absorb the experience of this neuro.You said he doubted you the first appointment.

Oh, I'd like to kick some of these neuro's right in the seat of their pants.They always want a black and white case.If it isn't bad enough you have lesions of the brain,they want something else to be wrong.

My prayers are with you

Toni

lilc · 06-14-2006, 04:46 AM

Thanks, Angels!

It's so strange, this is the same neuro practice my first neuro was at. SHE (my first) was very young - and very bright, and not arrogant, and very curious and determined. This new (to me) neuro is an old guy, very nice and personable. But I don't think he is as thorough. He said I'm a puzzle. Oh, but I don't have Lupus or Lyme. And he isn't arguing to stop any meds, in fact the drugs discussion came up when he offered something for fatigue. I asked what type of drug it was - because of that period of drug use, I don't want amphetamines. Turns out he was suggesting an amphetamine, I declined.

Steph, I grew up in MN and regularly got caught in the spray for mosquitoes as a kid! And had mono at 15.

My first neuro left this practice to start her own, but I can't find her. I think I need to start shopping around again, though.

Thank you for being here for me, love you angels!

duttin · 06-14-2006, 06:02 AM

Lilc,

I done some checking on coke and meth use,I called a family friend,who is a Dr in Michigan and I ask him about the long term effect of these drugs and what if any brain disorders would they leave.He stated that they could cause cognitive damage ,but not lesions.(he use to be a team DR for a major football team).If I have questions I call him,he's been a great help to me .

I as a child use to run through the foggers for mosqito's,they still fog for them here.

I've had mono twice.Once when I was 14 and then again when I was 20.

Take care,I hope you find a good young neuro.

Toni