Sjogrens linked to Bells Palsy

[fluffiebunnie]

Further to my last thread:

https://sjogrensworld.org/index.php?topic=8673.0

I have been doing some research -

http://ard.bmj.com/cgi/content/extract/60/7/724

Now question is.. I am next seeing the Rheumatologist in August. He said at my last appointment that if the blood tests come back negative again he is going to close my file.  Is this new problem likely to get me diagnosed with SS?

I have suffered with swollen partoid glands, dry mouth and eyes.. .Had my first major flare in September last year which lasted till January 09.  Since then I have felt a lot better but continued with the dryness only.  I refused a lip biopsy.

He has evidence to confirm my dry eyes via a Schirmer test, and he accepts my dry mouth problems.  He can now add facial palsy to my list of "Weird Symptoms".  During the flare I had major joint pains and muscle aches which have subsided.

Please advise as to whether you think this is all related and if you think the Rheumy will agree it is SS now?

[Mjan]

HI there. I know what its like to just be hanging on.. not knowing..no tx either.

I went to a Rheumy first to rule in or out Fibromyalgia. She suspected though that I may have Sjogren's due to longtime severe dry eyes..mouth and ears. My labs did not confirm it..but she used a "differential" Diagnosis for Sjogren's because I had so many symptoms for so long. She put me on the meds for Sjogren's..but left her practice. The NEXT Rheumy redid some labs and said I do not have SJogren's and thinks its more related to my autonomic dysfunction. He also closed my case.

BUT I stayed on Restasis as I never had any other drops work for me. Restasis is great. AND I am still on the meds for dryness in the mouth.. Pilocarpine which is Salagen I think?? Folks here would know. BOTH work great. So I dont care if I have Sjogren's or not. I just wanted my symptoms treated. AND turns out I probably do not have Sjogren's and do not want a lip biopsy. I am just not sure the biopsy will be accurate. But thats MY opinion.

Good luck in your search..

Jan

[Scottietottie]

Hi Fluffie 

OK - Bell's Palsy can be linked to Sjogren's but one can also have Bell's Palsy without having Sjogren's. I would definitely put it in a symptoms diary and if it does not go, or improve in the next three weeks I would try to move the appointment forwards.

It's possible to develop Bell's Palsy after sitting in a draft! (I know someone who did)

Take care - Scottie 

[harrigan]

Fluffie - replied to your original post with a link, not sure if it's same as one on this thread xx Ailsa

[fluffiebunnie]

Fluffie - replied to your original post with a link, not sure if it's same as one on this thread xx Ailsa

Ooops sorry... yes it was your original link that started to get me researching on the internet.. so thanks!  And apologies for forgetting you had originally given me the link that I took credit for lol... 

[harrigan]

No need for Sorries - just worried you may not have seen it!!  Have you noticed any improvement yet Fluufie? xx Ailsa

[fluffiebunnie]

Thanks!!!

No there is no improvement at the moment.. but also not got worse... my eyes are my biggest worry as they are too dry as it is, let alone not being able to blink!!  Came home from work early today as the computers/fluorescent lighting/electric heaters were getting to me.  We have no ventilation at all in the office so all the heat is bad for me at the best of times, let alone when I am feeling rather poorly.

[Scottietottie]

Hi Fluffie 

They're not pretty but you could always consider buying an eye patch. Then you could use surgical tape to tape your eye shut daytime too - and even put in some damp cotton wool or something to retain moisture until your blink is functioning again.

Take care - Scottie 

[fluffiebunnie]

Hi Fluffie 

They're not pretty but you could always consider buying an eye patch. Then you could use surgical tape to tape your eye shut daytime too - and even put in some damp cotton wool or something to retain moisture until your blink is functioning again.

Take care - Scottie 

I wouldnt be able to go out looking like that!!!! I would be laughed at!!! But I have conceded to a cotton ball pad of a night as the doctor said I can damage my eyes on the bedding if they stray open at night..  luckily (or unluckily) I sleep alone so no one can see how stupid I look!

[Scottietottie]

Hi Fluffie 

I've got to the age and stage that I don't care what I look like. I never was picturebook anyway. I've told the kids at work if they don't like the way I look - that's their problem - not mine. I can't see me!!

Maybe an eyepatch at night then??   

Take care - Scottie 

[hoping]

I had Bells Palsy during my first attack which was diagnosed Guillian Barre Syndrome, an acute paralyzing neuropathy.  Doctors never figured it was from Sjogrens at the time, just a neuro event.  That was 11 years ago, and they're just now conceding this may be Sjogren's.  I did have a very dry mouth and was given gross artificial salivia.  For the Bell's Palsy, they put Lacrilube ointment in it and taped it shut at night.  Continued to do this for some time even after I was able to come home from the hospital (was there for 2 mo.).  I am now experiencing numbness along the rt. side of lower lip.  Very frustrating all these painful, disabling symptoms which have come on in a huge flare since Jan.  Interesting that Bell's Palsy can be associated with Sjogren's.  Hoping the Plaquinel kicks in sooner than 6 mo. and that I'm okay'd for Imuran and start on it real soon.

Karin