concerned about symptoms/neuro. ?

[rnathans]

Hi Nathan,

My post earlier in this thread describes my experience with immunosuppressants/chemo,etc. Both my rheumy and neurologist say plaquenil is not sufficient for neuro symptoms. Depending on how I do on my present regime rituxan may be next.

If you feel like sharing more about your current situation maybe we can offer more suggestions/info.
Be well.
Ruth

[Denise]

Glad to read this post today,  I am frustrated, last visit at Rheumy said he was sure I had SJS, as shirmer came back failed...(3 months ago) had revist with him today, wanted more firm information. but he said he is reconsidering now because SJS did not manifiest as any Neurological symptoms. ,  Ha Ha funny, I told him that since our last visit my husband found this site and everything sounds like me....
my ana came up slightly positive but he said and I quote " I will consider it negative since it is not high enough"  humph???
I am frustrated.  he is scheduling me for neuro testing (once again), last mri 6 yrs ago was negative, blood test are negative  I am ready to give up again......... ,  I reiterated all my signs symptoms, diagnosis since all this stuff started...he says he sure there is something but can't treat until a positive finding
meanwhile I cant sleep this week, the 10 thousand pounds of coffee feeling, spasams are keeping me up...I am so tired but yet cant sleep ...and frustrated only getting about 3 hrs a day...just took some muscle relaxers and Nightquil...wish me luck.

Denise

[Chickpea]

Hi Denise

This is awful for you.  I'm so sorry that you've managed to find one of the doctors who needs educating about SjS.  The quick answer to your post is:  Get a new doctor!  What is this rheumy waiting for?  You have more positive symptoms than many people who are already getting treatment.  'I will consider it negative since it's not high enough.'  What's 'high enough'?

'SjS does not manifest as any neurological symptoms' ... tell that to your body when it's got the spasms and exhaustion.  Or to any of us here who have mainly neuro symptoms.  (I just tried telling my shaky, useless right leg and it ignored me!)

It might be worth posting and see if anyone here lives near you and can recommend a new rheumy.  Or look at the posts about Dr Vivino or Dr Birnbaum both of whom sound like heroes.

Take care - Chickpea