new to board--probable sj?gren's w/ cns involvement

[binx]

hello there,

i have a very long story, but i am going to try to keep this as short as i can.

i have been dealing with as-of-yet undiagnosed neuro problems since january '09.  after my neuro-ophthalmologist noted possible optic nerve vasculitis in november, i was referred to a rheumatologist who sent me to UCSF to participate in the international sj?gren's study.  i went in february and got my results back the other day which indicated that i have features of sj?gren's syndrome.  in specific, my lip biopsy revealed chronic sclerosing sialadenitis and one of my eyes was dry, and i had an abnormal serum complement c3 result.  my ana was normal, as were my SSA results.

i have had a series of brain and cervical spine MRIs during the past year which were clear until february.  a cervical spine MRI in late january revealed inflammation on the anterior cord.  my rheumatologist and neuro-ophthalmologist feel it is likely the sj?gren's, but my neuro is putting me through an MS work up as we "speak".  i just had another c-spine and thoracic MRI with contrast last friday and i'm waiting for results.

i'm scared.

thanks for "listening".

binx

[Dolly Dimples]

 A very warm welcome Binx,
                                   so many new people coming to the boards lately,it's scary !

                               Of course your scared , who isin't when these strange symptoms start rearing their ugly head?

                                Your Doctor certainly seems to be doing every thing possible to get to the bottom of it !

                              Stay with us , you will find people here who have every kind of complaints,
                               Someone is sure to have  something to add to yours..
                                                                                 Take care ,Dolly


                                             

[sleeeepy]

Hello Binx, I like you probably have Sjogren's with CNS involvement. I am just beginning in the process of figuring out what is wrong to get to the bottom of things.  Welcome to the board and keep us up to date on what you find out because we can all learn from each other along with giving emotional support and understanding.  Take care Mary

[Patze]

Hi Binx,

Let me also welcome you to the SJS World and family!  Please do look around as there is a lot of information that might help answer some of your questions.  And if you can't find an answer, don't be shy and ask away as there is usually someone about.

I understand your fear, and you've come to a very welcoming board.  I'm glad to hear that you have some good doctors, and I feel that that's half the battle with SJS! 

Again, welcome, and I hope to chat with you soon!

Take care of yourself, and don't forget to keep us updated us, okay?

Patze

[Scottietottie]

Hi binx 

Welcome to Sjogren's world. SjS and MS can be quite similar so it's good that your neuro is testing for everything. There are quite a few people on this site who have a dx of Sjogren's but who have negative bloodwork. I hope you get the answers you are looking for soon.

I hope you find this site useful too.

Take care - Scottie 

[binx]

hi again,

thank you to everyone for the very warm welcome to the board.  i have been perusing the many amazing resources here in sjogren's world--in particular the articles about CNS sjogren's--and have found some really helpful information.  i had no idea of the many parallels between sjogren's and MS and the significant implication sjogren's can have on the central and peripheral nervous systems.

i do have good docs now, but believe me, it has been a bumpy road to find them.  i sorted through some real pieces of work during the past year, as i am sure many of you can relate to.  being a 42-year-old woman with abstract neurological symptoms raises all the somatoform flags for so many doctors.  it was incredibly difficult to find people who would take me seriously, and now that i have, i am hanging onto them for dear life.

i do have one question that i wasn't able to find an answer to in the materials here.  i have been on plaquenil since early january and hadn't noticed much of a difference in how i felt up until a couple of days ago when i woke up and felt my head was clearer than it has been in i don't know how long.  after my MRI in late january revealed the inflammation, i underwent an 3-day solu-medrol infusion which aggravated all of my symptoms and i have felt like absolute garbage for the past two months.  could it be that the plaquenil has finally kicked in after nearly 3 months, or is this sudden clarity more likely the end of my most recent flare?

i see my rheumie next week and will likely get clarification from her, but just wanted to see if anyone here had any input on the matter.

my gratitude, again, for your responses, and i look forward to learning a lot from all the members of this board.

best wishes,
binx

[sleeeepy]

Binx, I have not begun to take Plaquenil yet..kinda afraid to..because I hate side effects of all meds But i have learned from others on this site that it can take up to 6 months for Plaquenil to fully kick in.  So, I am guessing that it is very possible that it may finally be starting to work for you..which is very good news!!!  Also, may I ask you if you had any bad side effects from taking Plaquenil? It seems with this disease we can never stop learning..knowledge is power to get this disease under control. Can you please explain the neurological symptoms you have?  Jst curious to see if our symptoms match at all.  Thanks Mary

[Scottietottie]

Hi Binx 

I reckon it could be Plaquenil beginning to work. It can literally take months! I found that it helped 'brain-fog and also gave me more energy. In my case I don't think it helps aches and pains much but I'm not intending to stop taking it in case it is actually helping!! 

I hope your head remains clear!

Take care - Scottie 

[Carolina]

Welcome Binx.

I'm at the point of considering CNS along with my primary Sjogren's Syndrome.  I've had PSjS for about 8 years now.

I have peripheral neuropathy (at least according to neurological tests) and also Interstitial Cystitis which is an autoimmune inflammatory complication of the bladder, very often accompanied by Sjogren's.

However I also take a huge dosage of Lipitor (80 mg) and have heard that it may cause Peripheral Neuropathy, so I'm considering several possibilities.

The entire process is difficult and complicated.  I'm trying to hang in there.  ;-)

Carolina

[binx]

thanks again for the great responses!  i sure do appreciate your feedback.

carolina:  i am sorry you have been dealing with so much as a result of sjogren's.  i'm sure you've already discussed this with your doctor, but is there a way to find a replacement medication for lipitor to see if the peripheral neuropathy subsides?  i know how hard it is to keep fighting the good fight, but i am glad to hear you are hanging in there.  my thoughts are with you.

scottie:  i have read elsewhere that plaquenil can sometimes take months to really take effect, but it is good to hear that from people who actually have had success with it.  i have my fingers crossed that my recent spell of clear-headedness is a result of the medication since that can further help to rule out MS.  i have noticed that my pain has not decreased, like you experienced, but i have had more energy and the brain fog seems to have lifted which is very encouraging.

sleeeepy:  i have not noticed any negative side effects from the plaquenil to date and it has been 3 months since i started taking it, but i know things can change.  i was also very apprehensive about it because i am really sensitive to medication in general and if someone's going to have a negative side effect from something, it's going to be me.  i actually just went for a baseline visual fields test today, and my neuro-ophthalmologist said everything looks good so far, but he will check me every 6 months to make sure my retina and/or cornea are not being affected by the medication.  if i can stay feeling just a little bit better like i have been, it is well worth it since my fatigue has been the most unmanageable part of my illness.  if i start to react poorly to the plaquenil, i guess we'll have to figure out another gameplan.  of course i won't tell you what to do, and i know it is a scary prospect to take it, but if there's a chance plaquenil can help you feel better, maybe give it a shot??

my neuro symptoms have been buzzing in my feet, stocking-glove sensation around my left calf and sometimes both ankles, burning and aching in my arms and hands, muscle twitches, bee-sting like sensations all over me, weakness and pain in my left hip and leg, and sometimes weakness in my left arm.  i have also had visual changes which my neuro-ophtho attributes to vasculopathy in my optic nerves.  mostly though, i just feel sick and weak a lot of the time, almost like i've been poisoned.

take good care, everyone, and again, your responses are really helpful.

best wishes,
binx

[JannaLee]

Binx and Sleepy,

I'm not a doctor so the following is my "layman's analysis" of Plaquenil and what I've heard from others on this forum.

Sleepy:  There are a whole lot of people on this forum who are taking Plaquenil with positive benefit, pretty much the same results Scottie described.  Some of us struggled with nausea and fewer had nausea with diarrhea.  The vast majority on this site were able to stick it out until their body adjusted and digestive issues settled down.   I remember there were some who were unable to tolerate Plaquenil at all, but not very many.

The scary vision side effect is rare because the dosage used to treat Sjs. is low (compared to when plaquenil is used to treat malaria) but should be monitored with the vision tests.

Binx:  I've been taking Plaq. for about 2 years and remember noticing improved thinking plus a lessening of the bone-grinding-fatigue one day.  I agree your mental clarity could be from Plaquenil.  If so, the improvement may even get better over the next couple months.  

Also, I want to warn you, that during these past 2 years I have had periods of cognitive impairment that are very scary and overall I think I've sustained substantial mental decline.  I guess I want to say to you that the brain issues can also come from Sjogren's/Lupus...and I'm sorry for it.  I'm sorry for this scary time and the miserable uncertainty of MS symptoms.

Wishing you well my dears!
Janna

[lynnmarie219]

Hi Binx,

Jumping in late here to welcome you to Sjogrens World!

I'm so glad to hear that you are finding this place useful and especially ecstatic that you have found some great doctors...you are right...hold on to them for dear life!!

WELCOME!

[binx]

thanks, janna & lynnmarie!

it is nice to find a place where i can bring this stuff up and have people know precisely what i am talking about for once. 

i'm still waiting for more answers, but you have all helped make it easier.

best wishes,
binx

[sleeeepy]

Janna and Binx thanks for the replies!!!   I am thinking about starting Plaquenil soon because besides Turmeric, vitD and B12 injections, and procardia for Raynauds, I am not taking any meds. The part of this that seems to be bothering the most right now would be the neuropathy part of it.  I am now having the facial neuropathy that is driving me CRAZY!! My right eyelid has been twitching continuously for two months now.  Thinking I am going to have to get to neuro doc soon..check for MS.  Gotta get my endoscopy scheduled and completed first before I ask GP for neuro referral.  No wonder people think we are hypochondriacs...YIKES!!!  This disease (whatever it is) is getting the best of me.  Anyone have MS with Sjogren's?  Anyway, my left arm and elbows have been less sore the past couple days because I have been trying to sleep with them straight...lol.  Binx what works for me is trying to keep arms on pillow straight along side my head.  I guess it gives me the feeling of having them under my pillow   Take care....Mary