Back from MS Specialist no MS

[kerrtelli]

Well this morning was very frustrating.
Let time I saw this guy he said PROBQBLY MS.
today, he said based on the MRI's it doesn't look like ms.
I have 21 T2 focal hyperintensitiies predominantly subcortical in the parietal and frontal lobes.
The spinal MRI said C5-C6 and C6 -C7 small posterior disc bulge.

So I am back in the land of limbo.
I have an LP on Thursday and a VER next week.

I am feeling completely and utterly hopeless.
This is my last course of action. This was the only doc who would take my insurance.
I'm screwed!

Thanks for all of your help.

[Deb61]

I think you need to stick through just a bit longer to follow through with the LP.  He shouldn't think outloud because the LP and VEP may provide more information as to what is causing your lesions, and it could very well be MS.  I've heard of neuros saying that it could be something else prior to a diagnosis of MS.  

Hang in there just a bit longer, and if you're back in the land of limbo after that, can you see a different neuro?  You mentioned that he's the only doctor your insurance will accept, but will they accept a regular neuro that doesn't specialize in MS?  Sometimes there's some excellent regular neuros.

Deb

[Starryeyes2]

I had a nuero who claimed to be an expert on MS. Ya right! He had me believing my MS was psychosomatic-I was just crazy. He did a VEP on me-came out normal. He refused to do an LP because it isn't accurate. Refused to give me DMD because he didn't know what he was treating...your story is so familiar.

I had to fly to Seattle to an MS center with my MRI's where the Specialist took 1 look at them and had me dx within 10 min. If I had listened to the other moron I would still be undisguised. It infuriates me that there seems to be so many Nueros that won't diagnose MS when the evidence is clear.

Don't give up! You know what you know. Please let us know how things are going for you.

Hugs
Kristi

[Sidesteps]

P.S. I don't think you have neuro-sarcoidosis. My Neuro mentioned it to me as a possibility.

[Sidesteps]

(((Hugs)))

Please don't give up. He's referring you out for more tests and trying to answers to something. Get those tests done and see what happens. You deserve to see these answers.

That said, it is possible that you don't have MS but one of the more rarer mimics. My Neuro mentioned neuro-sarcoidosis being very difficult to get a firm diagnosis. I was tested for it but it turns out that it can only be confirmed by biopsy. They won't be biopsing my brain anytime soon!!!

I know that doesn't help but there IS something going on. Your MRI's are proof of that. Stay strong. We will help you. :)

Did he give you anything to help with your symptoms?

[kerrtelli]

Thanks guys.  Actually I am also shocked and have decided that has to be a doctor out there who can help me.

This guy also said that I have atypical lesions.

I am going to post the whole MRI reposrt and see wht some of the "experts" have to say.

We also asked him about treatment and he said that he couldn't because he doesn't know wht he is treating.

Thanks again.

[jujuminx]

Well, did he say what he thought you had or at least what he is looking for with the LP and the VEP?

I am sorry it didn't go as expected BUT it's not over!  Have you posted your MRI report (the long version)?  If not, you might want to do that as there are people here that can help w interpretation.

MS is such a heavy dx that it is very common for dr's to really hesitate before dx'ing it.  The surprising thing was that he seemed so good, until he was bad...

I am sorry but please don't give up!  Ess is right, many here with same story and finally got answers.

Julie

[essdipity]

Kerri, I'm floored. I can't imagine what more evidence he wants. Did he just leave you dangling? Did he say what else it could be or that he would investigate further?

I virtually never say this but I'm positive you have MS. Can you go to some other neuro, if not an MS specialist?

Stick with us and don't give up. Many here have had exactly the same experience, and many have been subsequently diagnosed.

Sending a big hug to you,'
ess