According to my MS Specialist

[LisaJF]

Today was the "big" day to see what he thought of what was going on with me with the lessening of symptoms.

He said he didn't know.  He had Movement Disorder specialist, a Neuro-opth and a urologist look at me and they can't come up with nothing.  

The only thing left he said is, "Conversion Disorder".  

I asked him after our first initial visit, does he remember when I called him about an hour later to ask some questions and one of them was, "Do you think this is psychogenic or a conversion disorder?"  He said, "No I don't remember".  I said, when I asked you, you said "No".  I also told him that if I truly felt that this is what I was going through, I would of seen a psychiatrist long before seeing him.  In fact, if I thought by now if I had a conversion disorder, I'd be seeing one today or making an appointment to see one soon.  I told him that I would rather have something that is "fixable" and go on medications and participate in therapy to get this all squared away.

I know in my heart and with my knowledge base in the medical field, that this is not the case.

I think he had given up on me himself.  

So now what.

Lisa

[anon07072023]

I wouldn't bring up the conversion disorder at all. No way. Just bring him your records, MRI scans, etc. and let him figure out everything on his own.  I think that would be the best plan.  

It's great that he can see you that quickly and that he costs less and that he take payments!!!  

Definitely good news today!
-Kelly

[LisaJF]

He said there were no changes in the lesions.

I have what I need for him to get a handle on what was done along with all my MRI CD's from 2007 to 2011.

[Sidesteps]

I think you should go see him tomorrow ---- I don't think there is a need to discuss conversion disorder unless he specifically asks. I doubt he will question it taking one look at your MRI. Do you have all your other test copies too so you don't have to waste time collecting labs and such? He can just look at them tomorrow?

One other question: What did your MRI report say that goes with the MRI on your profile?

[LisaJF]

Thank you everybody.....

I had called a MS Specialist who was the Director of the MS Center at NY Weill Cornell who now has his own practice (I think he said he broke off from the hospital full time?)

Anyways, I went through my Medicaid phone directory and found his name, looked him up on the internet and he is considered one of the NY's Best MS Specialists.

I called the phone number the Medicaid provider directory gave me and it was his direct line (cell phone).  He picked up the phone and said, "Hello".  I immediately apologized saying, "I think I have the wrong phone number because I'm hoping to get a hold of the doctor's office".  "This is the doctor, he said.  I was like OMG!  

Long story short, he doesnt accept Medicaid or subdivisions of medicaid's plans but he said he will decrease payment from 500.00 to 300.00 for me and that I can go on a payment plan and just to bring a check to put a down payment on the bill.  He said he could see me tomorrow at 5pm.  

Question is: Do I tell him what my last visit with my MS Specialist said about conversion disorder? I'm not ashamed to say that this was "his" conclusion, because I do not believe what has been going on is being made up or dissociative or factitious.  Or do I leave it alone and let him decide? Or do I cancel this appointment make it later in September, rush to get a neuro-psych evaluation then go back and can get it all out on the table?

Please help since I dont have much time.

Lisa

[kel1lost]

Sorry you are going through this Lisa.  I would be very frusterated as well.  Beyond frustrated!

I agree with everyone that it's time for a different neuro.  I truly hope everything works out for you Lisa.

I also wanted to say that it seems like every time There are posts about an MS specialist visit, the patient gets no aswers.  I don't know why but it seems like the opposite would happen.??  

You will be in my prayers!  Have a better day, ok!  

Kelli

[SarahL2491]

I like the up front challenge there!  She needs a new neuro for sure.........sorry is so frustrating........