Questions for Neuro appointment tomorrow

[lindar]

I have been dx'd with sjs and taking plaquinil for over a year.  It has helped with the joint pain but other symptoms have gotten worse or remained the same since starting Plaquinil.  I have brain fog, peripheral neuropathy, some episodes with weakness and tremor. 
I have seen a neuro and have had all the tests.  EMG abnormal in lower back.  MRI showed white matter lesions in brain.  Lumbar puncture elevated protein levels but no MS bands.  Cognitive testing shows deficits in attention, memory and fine motor. 
I have an apt with the neuro tomorrow to go over all the tests.  I think he might be leaning toward a dx of MS.  I'm not really sure it is MS but instead think it is Sjs with neuro involvement. 
He mentioned at an earlier apt that he thinks my rheumy might not be treating my AI disease aggressively enough.  My rheumy does not believe that my neuro symptoms are caused by sjs. 
Any suggestions about how to approach this apt?  If he wants to dx this as MS should I question that?  Is there a treatment that I could ask him about that might better treat my neuro symptoms without being treated for MS? 
I am in an appeal process with my insurance company to see specialists at UCLA but have to jump through many hoops before this can happen so it might be some time before I get there.

Any advice would be appreciated.

[Scottietottie]

Hi Lindar 

Hmmmm.... tricky one. How open is your neuro to suggestions? I've found that some are a lot more open than others and that some feel threatened when questioned by 'patients'.

I personally probably wouldn't dismiss his actual diagnoses but I would try to tell him that I'd joined a site started by 2 women - originally dxd with MS, who then found that their symptoms were neurological manifestations of Sjogren's. What does he think? Possibly print out some links for him to look at.

I always tend to play a bit dumb for doctors (I'm not saying that's the way to do it) but I tell them what I've read and then ask them for their medical evaluation of it - becaiuse they're the ones with the expertise. It usually flatters their vanity and makes them feel good.

Good luck with the appointment.   Take care - Scottie 

[Epson]

Scottie,

I too play dumb when visiting doctor, I find it comes naturally for me

[hoping]

If he talks about immunosuppressants or MS medications, you could mention Imuran, CellCept, or Methotrexrate as possibilities to try and just see what happens.  These are often used for neuro issues with Sjogren's.  If they work then perhaps you are right.  Did you have positive blood work for Sjogren's or positive lip biopsy?  Have you had lesions on spinal cord?  I've only had one lesion on spinal cord that's been detected.  This lesion resolved in six months, is possible there's been more that have come and gone.  I do have peripheral neuropathy.  Lesions on the brain leave marks/plaques, so are more easily detected.  This is a tricky diagnosis and is really maybe a game of trial and error.  It usually does work out better to act semi dumb, but place all options on the table.  Coming from a medical field this is hard for me to do, but has usually panned out better to not expect to talk shop.  Yet to sound concerned for my welfare and just put out there what I've heard or read about, and ask ever so nicely what they think.

Hope this helps.  Good luck,
Karin

[lindar]

Thanks for the advice.  I think it might be a good idea to just ask what he thinks about ideas.   It isn't hard for me to act dumb 

It is really good to know some meds to mention that he might be willing to let me try.
I have a high ANA and am positive for SS-A and SS-B.  My dry symptoms have gotten better and worse in waves or flairs.  My parotid gland left side sometimes swells and I look like I have the mumps.  It is very painful and I can't eat or drink anything.  I haven't had a lip biopsy.

They didn't find lesions on the spinal cord.... just on the brain MRI.

I hope to make some progress with this appointment.  I'll let you know.  Thanks again for the advice and support.