My Spring Flare: New, weird symptoms appear!

[RoseL]

Hi Everyone,

I seem to have a "flare" every Spring, some worse than others, but this year's new symptoms have me really concerned. So, I'd really appreciate your input.  In January, I started having weird sensations in my cheeks (muscous membranes). They seemed thick and "stiff" and I kept biting them!  I thought that I might have thrush, so I had my friend, a dentist, check it out. He didn't see anything. So, I figured it was just a SS thing. Then I started having paresthesia in the left side of my face, along the lower 2 trigeminal nerves (jawline & cheekbone). It's not painful, but more tingly and "weird" sensations. Not happy about this new development, but it's manageable. However today, I felt the tingling in the back of my head (lower, left quadrant). That freaked me out, but I was on my way to a meeting so no time to worry about it. Then a couple of times during the meeting, my hearing level dropped significantly. It didn't last long, but of course that freaked me out too. I was trying to figure out what I was going to do and what excuse I was going to give  if I had to suddently leave the meeting. Fortunately, after the 2 episodes, it didn't happen again, but now I'm really concerned. I've read the posts re hearing loss so I will definitely get it checked out.  Fortunately, I have an appt with my ENT next week. I have been under a lot of stress since January which usually increases my symptoms. I was considering taking on a new project at work, but if the stress is going to cause me to flare, it might be time to retire to Florida!! LOL   So, anybody else have these hard to explain symptoms:) 

FYI, I've had SS for ~20 years since I was ~40. It was an acute onset triggered by permanent eyeliner (I was trying to make my life easier). I am a physiologist and was at an NIH at the time, so, it didn't take too long to get it dx. It's been mild most of the time except during flares when I am extremely ill and I really can't function. I only take pilocarpine (5mg QID)[/size]

[Jasper]

I am sorry you are having these problems.

I have not had your symptoms. However, if it was me, I would be concerned that your symptoms could be neurological manifestations of Sjogren's. If it was me, I would see a Neurologist about the symptoms.

A recent Medscape article about Sjogren's related neuropathies said, "In the largest series of patients with Sj?gren's syndrome-associated neuropathies (92 patients), the two most common were sensory ganglionopathy (39%) and painful small fibre neuropathy (20%); 16% had trigeminal neuropathy, 12% had multiple mononeuropathies, 5% had multiple cranial neuropathies, 4% had polyradiculoneuropathies, and 3% had autonomic neuropathies."

Wishing you the best.

[RoseL]

Thank you Jasper!  I have an appt with Dr. Birnbaum, JHU. He's the "go to guy" in my area for neuroligical problmes related to Sjogren's. In addition to being a nerologist, he's a rheumatoligst and Internal Med. I'll see what he has to say.   

[brenna93]

Sorry about your new symptoms. I've experienced moments of decreased acuity in my hearing as well during flares. I'm familiar with Dr. Birnbaum and hope he can help you!

[gurs]

Ive been keeping track of my flare symptoms etc. I was doing so much better in the winter it seems..hardly any aura migraines and less neuro issues. We'll, about a month ago, all heck broke loose. My sinuses, allergies, migraines back with full vengeance. My joints hurt so bad, cant even walk. Arthritis worse than ever. I also looked back over the last few years, and spring/early summer is when im always super sick...has to be the allergies creating a systemic inflammatory effect..for me anyways. Its horrible.

Im still amazed by how allergies seem to trigger this...trying to find something now to take less drying.

Gursie

[finallyadx]

SO sorry to hear about your increasing symptoms and the fact that they are scary and causing much concern.

I have had similar symptoms and was checked out a little over a year ago...the neurologist I saw truly had no real answers...this was before being diagnosed with sjogrens. 

Then most recently I saw an ENT who was by far the worst medical professional I have encountered yet...who offered no answers or even possible answers.

Finding a good ENT or neurologist is probably key here - make a list of your symptoms so that you do not leave anything out and hopefully you can get some answers and possible options for treatment.

My hearing has been slightly different since being on plaquenil - I get some buzzing in my ears every now and then and my hearing seems to be better some days than others...strange, weird symptoms. 

Keep us posted.

[RoseL]

Gursie,  It is amazing how any little thing  that ramps up the immune system triggers a flare!  I was in Florida for the month of April and while I still had the symptoms, they were very mild. Then back to Maryland and boom, everything escalates and  I'm getting these scary symptoms.  I was supposed to see my ENT next week,, but she was able to squeeze me in tomorrow.  I'm glad about that. I need blood work done....it's been a long time and I'm thinking that a course of prednisone would help. 

PS I'm trying to figure out how to repond directly to someone's post. Im sure there's a way.

[Tivia]

Rose I think it becomes easy to blame everything on sjs, I did too at the start. Let me tell you about something you said that strikes a chord with me....

In January, I started having weird sensations in my cheeks (muscous membranes). They seemed thick and "stiff" and I kept biting them! 

That started with me over last winter, I noticed the inside of my mouth esp my cheeks felt thicker, and I bite them all the time. I assumed sjs and told my rheumy she dont think so. I have UCTD that according to her is developing into a connective tissue disease. Scleroderma  is at the top of the list, one of the things that it does is cause the inside of the mouth to start to draw in. People know about the classic purse mouth but before that happens the cheeks start to like shrink and draw in, that causes biting the inside of the cheeks. This is a very early sign. Not saying thats what you may have, but be aware that these 2 diseases do go side by side. And be candid with your doctor about any new symptoms.

[RoseL]

Rose I think it becomes easy to blame everything on sjs, I did too at the start. Let me tell you about something you said that strikes a chord with me....

In January, I started having weird sensations in my cheeks (muscous membranes). They seemed thick and "stiff" and I kept biting them! 

That started with me over last winter, I noticed the inside of my mouth esp my cheeks felt thicker, and I bite them all the time. I assumed sjs and told my rheumy she dont think so. I have UCTD that according to her is developing into a connective tissue disease. Scleroderma  is at the top of the list, one of the things that it does is cause the inside of the mouth to start to draw in. People know about the classic purse mouth but before that happens the cheeks start to like shrink and draw in, that causes biting the inside of the cheeks. This is a very early sign. Not saying thats what you may have, but be aware that these 2 diseases do go side by side. And be candid with your doctor about any new symptoms.

Tivia, Thank you for sharing although scleroderma scares me! I've had these symptoms since January and finally going to see the doctor.  Between my ENT and the Rheumy at Hopkins, hopefully, they'll be able to figure it out. 

[Tivia]

Rose you likely dont have what I do. Just thats how it does that to me, the insides of my cheeks are all bit up just from eating normal meals sometimes just talking my cheeks will catch in my teeth. But I have other symptoms that when taken on the whole come up to some type of connective tissue disease.

Yours could be any thing from dental issues to even anxiety can cause us to clench teeth and maybe you are unconsciously biting. If your mouth is dry you could be snagging the dry cheeks with your molars. Just talk to your doctor about it because one thing for sure it gets painful to keep having bites in the cheeks so you at least want to let them know.

[RoseL]

Went to the ENT yesterday and saw one of her NP's and the audiologist. I'll see my doc Monday. The audiologist checked my hearing, which is good, and told me that they have ~72 hour window to treat sudden onset deafness - like I've seen people describe in other posts.  My hearing decrement was mild and transient (a couple of secs, but nonetheless very scary).  The NP gave me a px for a course of prednisone. It's short (6 days) and a moderate dose (starting with 30mg and then tapering), but it should tide me over until I see my ENT, Gail Anderson in Maryland....she's wonderful!  I've been going to her for ~20 years!

The only time that I've taken pred., was 1996 for a severe allergic rx to tanning spray. No, I didn't test for an allergy to it and yes, I sprayed it all over my body, so I was a mess!!  The derm called it an "Id Respose". That time I started on 60 mg and I believe that I was on the taper for 10 days. So, I'm wondering if 30 mg is sufficient???  However, I am feeling much better!! In fact, as soon as I had the px for prednisone, I felt  better    Funny how stress and anxiety exaccerbate the symptoms or at least the perception of the symptoms.   I'm not on plaquenil or methotrexate, but I'm considering going that route.  I took plaquenil when I was first dx and my main complaint was dry eyes, but it didn't seem to do anything for me, so I haven't taken it since.  But with all these new symptoms, I should probably give it another try. 

FYI,  all of my friends and neighbors who have AI seem to be on prednisone right now.  Sping doesn't seem to be our time of year