Neuro said conversion disorder, psychologist says not

[Mikeyslost]

I know it has been a while since I have been on to update but I finally got in to see the clinical psychologist that the neurologist referred me to. We spent a couple of hours talking and she had me take some anxiety/depression tests, which I scored pretty low on, and she told me that she didn't feel as though I fit into the conversion disorder category. She also told me that she didn't know how she could help me because of this.

She asked me what my next step is going to be, and quite honestly I don't know where to go from here...do I find another neuro and start from scratch or just wait for another symptom to appear?

If anyone has any advice I would be very thankful!

[LisaJF]

Mikey:

Excited to start the process?  How enthusiastic!  I do hope you will find your answers that you seek.

I was also told that they thought I had some "psychiatric overlap" and the doctor never explained overlapping what.  At first when I heard that I was truly insulted, but then realized "Hey $hit happens. And thought someone out there has to have some psychiatric issue, why would I be excluded?"  I rationalized away battling back and forth knowing full well my symptoms were real only to be told by one other Neurologist who I went to see a few times, "You can think its real, but it's not". What a mind phuck.

Then along came twopack (a wonderful and dear friend of many here), knocked some sense into me.  I took a break seeking a diagnosis and tried not to be over attentive to my symptoms and go on with life as I could do so for awhile.  Until...another new neurological issue popped up along with some old ones.  

It was then I realized I had to believe in myself and know myself and go from there.  I allowed two doctors to convince me this was all in my mind.  It was not --  Normally, after they tell you its psychiatric (trained to tell you in a professional way) they think that all of a sudden your symptoms will gradually subside and the frequent doctor office visits and complaints will cease, proving they were right.  

Well, I stopped going to the MS Specialist and never called my primary back for over a year and when something came along, I just went to the ER, especially if my pain could not be controlled at home.  I'm a true self medicate at home type person LOL.  I had Baclofen, Neurontin, Motrin 800mg and Flexeril to play with.  But when they didnt work, then the ER visit came.

Twopack would tell me to tell the doctors in the ER, instead of injecting me with medication, (heavy duty meds) zonking me out and sending me on my merry way home, why do we not figure out WHY I am having these issues?

Didnt happen.  So I had to make a choice as I entered into the second year of avoiding my primary and MS Specialist. It was clear after 2012's incident that I had something going on when weakness overcame me, that I could not stand and hold my weight and fell to the ground with camera and all (face first might I add). I was incontinent of urine and stool.  I was short of breath and could not hold myself up even in a sitting position.  I still remained aloof until 2013 when I started getting lost in my own hometown taking me two and a half hours to find a place that was 12 miles from me. Or picking up my boyfriend at the airport (one I frequented for 12 years) and he had to wait until I got unlost for 1.5 hours :D

I then went to my primary and told her what happened.  She ordered an MRI of the brain (without contrast and no cspine or tspine) ensuring to let me know that she did not think it was anything to do with MS.  Fine I said, and went to get one.

The last MRI on June 21st report states I have a new hyperintense signal in the lower aspect of the Corpus Callosum.  Whether it is an artifact, I do not know, but trust me when I say this, its not all about the MRIs anymore.

MS is a clinical diagnosis and the MRIs, evoked potentials, Lumbar punctures are diagnostic tests that support the diagnosis of MS but does not define it.

I used to wish there was a change to prove that I was not lying about what I've said about my symptoms, but even with a neuroradiologist report that states there was an increase or progression in 2011 to the new MRI of 2013 of new lesion in corpus callosum, I' was still in limbo. Undiagnosed and still suffering from ridiculous fatigue (like someone injected me with anesthesia), weakness, paresthesias and sometimes pain.  Balance is another issue.

I'm long winded can't you tell?

So now in two days, I am finally going to see a MS Specialist.  I know the feeling all too well when you get enthusiastic that you're taking control, you're doing something about your health issue and counting on these people to get it right and diagnose you right there.

I'm just forewarning you that it may or may not happen at that visit, but I agree with you that you're doing the right thing and on the right path.

Don't let anyone tell you that you're internalizing conflicts causing you to have symptoms.  

I've been through a lot worse in my life and I never ever had these issues. (ie: losing a son as he was terminally weaned from a ventilator or my eldest son who was diagnosed with Non Hodgkins Lymphoma).  

Trust yourself, do whats best for you and find a doctor who has the same passion to do so.  Then and only then, will you be in good hands.

Lisa

[Mikeyslost]

Well I filled out some initial paperwork for the Cleveland clinic and got it submitted to them. I spoke with them Friday and they are supposed to have more information for me this Monday! I'm kind of excited now, about starting this process. After doing a lot of thinking, I feel like this is the right direction to be heading in, and hope that it brings with it some much needed answers. I hope that you all are doing well and thanks to everyone for their help and support!

[Mikeyslost]

Thanks for all of your guy's input! I must agree with you that seeing a new neuro is a good idea and am definitely going to start looking in that direction! I had a check up at my endocrinologist's office today and was talking with him about what all is going on, because he's been my endo for almost 15 years and I trust his opinion, and he suggested that instead of just going to a new neuro go to the Mayo or Cleveland clinics and get a complete work up. His thought with this is that way I see every doctor necessary in a short period and they can all cuss and discuss together to figure it out. He thinks if I just simply go to another neuro that I will just start the frustrating cycle all over again.

So all that said I guess I will see what it takes to get into one of the clinics and go from there. If nothing else I will be back to looking for a new neuro...

Thanks for all your thoughts and hope that everyone is well!

[Guitar_grrrl]

What a lazy neuro!  Bad neuro!  All that said, though, follow up with him to see what he says about your psychology consult.  If he still blows it all off, run, don't walk to the next neuro on the list.  Oh, and do keep a copy of your evaluation, as well as all your other test results and MRI discs.

Welcome back!

[maxthecat43]

I was told that at first too, even though my first mri was full of lesions, including dawson's fingers.  I agree with Kyle.  A dx of conversion disorder basically means the doctor either doesn't have enough experience, or worse, is just lazy.  

True conversion disorders are relatively rare.  

Tammy

[kwarendorf]

I vote in favor of finding a new neurologist too. I'm no expert, but to me Conversion DIsorder is the DX of a lazy doctor. I'm also in
favor of your revisiting the psychologist. I spent a year, following my DX, talking with a therapist. It was a huge help.

Kyle

[HVAC]

That is good. I was told my when I was being diagnosed with MS it was just anxiety. A Psychiatrist said "No you have something Neurological not Psychiatric and that helped me get a diagnosis of MS.

A new Neurologist might help.

Alex

[Mikeyslost]

Yeah send said she was going to send a note back to the neuro and let them know what she thought. I am going to see her again just to follow in a couple of weeks just cause we talked about so much and I am going to ask for a copy of her notes/report for my records as well. Thanks for your advice!

[Lulu54]

Was this psychologist sending the  evaluation results to your Neuro?  I would definitely do that and make sure it becomes part of your medical record.  Starting with a new   doc might make sense  but only if you are currently having unexplained symptoms.  Welcome back !  Don't be a stranger, ok?