Find another new neuro?

[SunshineDaydreams]

I'm at the end of my rope here. So, I was dx quickly (May 2012) by a neuro who didn't pay a lot of attention to anything I said and had an awfully big ego (I'm THE Man!). Then he disappeared for over five months (which I later found out was personal issues - can understand that).

I go to Hopkins to a neuro I liked - who decides that, although he confirms I have MS, since my lesions are small, he feels my symptoms are psychogenic....? He wants me to find local neuro.

So, I find local neuro who seems to actually listen to me and be willing to give me some help - til she gets letter from Hopkins neuro saying my symptoms are psychogenic. She does not have, nor ordered, any test results, images, etc. to base any dx on, btw. She tells me, truly with a sneer in her voice, that I don't have any *real* symptoms.

I get my records from Hopkins. It details where all of my lesions are - every single one correlates to symptoms I have. How does that add up to psychogenic?

So - I feel better about the dx, they had me thinking I was crazy again for awhile there. But, I don't feel good about any of these neuros.

Right now I have an appt sched with the local neuro at the end of Feb. And the geniuses at the hospital scheduled me for an appt with the original neuro (The Man) in April, even though I told them I don't see him anymore.

Do I bother with the sneering local? Go back to the Man and put up with the attitude I'll get for even going elsewhere? Or go down that confusing road to find another (maybe even a wholistic neuro of some sort who could understand me? I can dream, right)

[Nicole13]

You are in control of your medical. You pay the bills, you get to decide who you see and who you dont see. I say you find another neuro that treats you with respect and dignity, and actually listens to you.

I went to 2 neuros (after and ER visit and a PCP telling me they thought I had MS). I got frustrated because all they told me was Yes they thought I had MS, but they wouldnt dx me and werent giving it their all to help me.

So I went to a new PCP to start out at ground zero. She did look at my test and performed tests of her own and wabam, I got a dx on the first appt after talking to her for an hour and a half.

I say take control and get a new neuro! Im sorry you have to go through this and I wish you the best of luck!

[22cyclist]

For sure go to another neurologist. Only a neurologist can diagnose you, and you need one that has some sanity behind them. Perhaps either leave that psychogenic page out of your records when you give them to the next neurologist, or explain/question the notion of psychogenic lesions and the validity of that even occurring in medicine. Really? Keep searching. Get to a University Hospital if possible with an MS specialist. They will put this silliness to bed.

Take care and good luck
Lisa

[SunshineDaydreams]

Unfortunately the Man is at a University Hospital - the one I worked for until this happened. I guess I will start the search again.

I know where this is coming from. In 2000-2001 I was sent to neurology for dizziness, limping, and language problems. They found one lesion, and also said I had a depression. Well, in 1998, my husband was dx with scleroderma and given two years to live. Wouldn't you be a bit depressed?

That is the extent of the records these neuros have from that time period. They do not have the records (nor do I have access to them or even know where this guy is anymore) from the neuropsychiatrist I was referred to in order to determine if my depression was causing psychogenic symptoms.

That neuropsychiatrist determined that yes, I had a mild situational depression, but no, this was not the cause of my symptoms.

I really believe none of these neurologists have done anything but transfer something from 12 years ago into my record today without warrant. You can't tell me you could even begin to dx clinical depression or conversion disorder in two visits, which is all I had with the Hopkins neuro or the sneering local.

[tortis]

Hi Sunshine, I went from the late 70's to 1997 being told it was all in my head. Right now the main thing for you is to find a good nuero and G.p. that you are comfortable with. You are the only one that knows your own body and do not let any of them tell you any of that bull. When I was finally diagnosed in 1997 my G.p. had already retired but he came in to my place of employment and I was able to tell him that he was partially right anyway since a lot of the lesions were in my head. My point being do not give up or in, you are the boss and they work for you at least thats the way its supposed to be. PEACE

Toris

[MSW1963]

I would have a candid and frank discussion with any neuro being considered, either a new one or a neuro seen previously.

I would disclose the episode of situational depression 12yr ago, that the depression under the circumstances was a very appropriate response considering your husband's dx.

I would also discuss the fact that you are looking for a neuro who can treat your current medical condition.

You are not seeking treatment for an episode of situational depression 12yrs ago, that you have since recovered from. You have a dx for MS and are seeking treatment appropriate for that dx.

Depression is one of many possible MS sx's and not the only explanation for all of your sx's.

I would then listen carefully for any condescending remarks, evaluate the doc's general attitude when responding to you.

Sorry if this is a double post. I thought I posted it early sunday afternoon.

[SunshineDaydreams]

Hi MSW1963 - not a double post

Thank you. I am thinking I'm going to fax my GPs records up to the local neuro along with a letter stating something like you've suggested. In reviewing the records my GP gave me to take to this woman (which I realized yesterday I forgot to take), my GP states several times how my speech and level of activity has changed, but makes note that I am still actively seeking new goals and concentrating on what I CAN do.

Something about the local neuro makes me think I may have taken her the wrong way. There's something about her I really like, not the least of which is her coming in on a day off to get me into my first appointment faster, and working with me to allow oral steroid therapy because I couldn't afford the IV therapy.

I don't like the way I've learned she pushes drugs. I decided on a DO because I didn't think she'd be so drug happy. Because of this, I do intend to continue looking for someone more experienced in natural approaches to MS as well as medical. I'll see how she handles my letter and go from there.

Thanks again - and Happy New Year!