Good News, Not So Good News

[Sheltiemom]

Hi All,

Been away from the Board for a little bit what with having scheduled diagnostics, etc.  But, more importantly, my husband's brothe passed away and was buried a week ago today.  The hospice care at home helped him so much in those final weeks.  So it's been a very sad time.

Good news:  Brain MRI showed NO evidence of stroke anywhere to explain this 24/7 neuropathy and extreme skin sensitivity to all kinds of stuff.  Both neuros agreed that it's caused by Sjogren's.  They said I'm to ask my rheumys why they haven't started to treat the underlying Sjogren's either with anti-inflammatories or immunosuppressive meds.  Good question.  I KNOW NOTHING ABOUT THOSE MEDS, SO CAN ANYBODY ENLIGHTEN ME AS TO WHICH ONES ARE USED TO TREAT WHICH MANIFESTATIONS OF SJOGREN'S?  Don't seem to have any kind of rheumatoid problems.

Not So Good News:  Brain MRI showed a cyst inside the skull pressing on the left brain which affects speech, among other things.  My plan is to do nothing and see if any further symptoms develop besides that recent short episode of garbled speech.  Hope the thing shrinks or stays the same.

All bloodwork normal, including what would indicate carcinoid tumor (I've the face flushing/redness/heat - a symptom of carcinoid).  Waiting to get results of autonomic testing (mainly for heat intolerance).

Cheers,

Sheltiemom

[Bucky]

Sheltiemom,

My sympathy to you and hubby on the loss of your brother-in-law. 

I'm glad that your MRI showed no evidence of a stroke . . very good news.  As far as meds are concerned, I will leave that question up to the others more informed.  I only take Plaquenil for Sjogren's, whereas I know others have a whole slew of pills they take.

Take care of yourself . . . please keep us updated.

Bucky

[DragonflyC]

Oh, Sheltimom, you've had a lot going on.  So sorry to hear about your brother-in-law.

As for immunosuppressants, prednisone, Imuran, Cyclosporine, and Methotrexate would fall into that category and are the ones I see mentioned most here. 

NSAIDs, non-steroidal anti-inflammatory drugs, include things like ibuprofen and Celebrex.  Here's a list of other antiinflammatory drugs: http://www.livestrong.com/article/27125-list-antiinflammatory-drugs/



   

[Carolina]

Dear Sheltiemom,

Hugs and kisses and sympathy for your loss.  Life keeps going all the while we have our own illness to deal with, doesn't it?

I will look forward to reading the answers to you get to your questions about the medications.

I know I need to start on serious medications as my Peripheral Neuropathy is growing worse and affecting more parts of my body.

Please keep us posted about everything, including the cyst!   You seem to be calm about it, which I assume is the result of some research and discussions with your doctors.

Kisses

Carolina

[Sheltiemom]

Thanks to everyone for the kind words and wishes.

Carolina said that I "seem calm" about the inside of skull cyst pressing on the left brain.  Well, that's because unless it grows and causes real difficulties, I don't intend to do anything about it.  Am being optimistic (stupidly?) and just hoping it won't get worse.

However, am experiencing some arms, hands and legs weakness that is constant now.  Also more tiredness and absolutely no feelings of hunger - ever.  I eat at mealtimes because it's necessary.  But there's no interest in or enjoyment left regarding food.  Is this an uncommon SjS thing, or not so uncommon?  Even my beloved chocolate doesn't thrill me anymore.  WHAT'S LEFT IF NOT CHOCOLATE? 

Cheers,

Sheltiemom

[Carolina]

Wow, I'll be eating when I"m six feet under!

I haven't had any loss of interest in food.

Wondering about other Sjogies?

Is this something that might happen to me?

It would be wonderful I think.

Maybe not.

Staying tuned.

Carolina