Severe orbital pain and ataxia

[vrystaat]

Hello
1 week ago I experienced severe orbital pain and ataxia, with no precipitating factors. This lasted about 12 hours. My Rheumatologist has no idea of the cause, but I believe it is due to SS.
I have advanced stage SS, with Polymyositis, with other typical symptoms of SS. My quality of life is very poor, and consists mostly of resting. I have been told that I may need a renal transplant.
I have been on all the drugs: steroids, Methotrexate, gamma globulin, Imuran and finally Cellcept. Only the Cellcept helps, and keeps my blood chemistry down. Cellcept is a horrible drug, with many
severe side-effects. The worst of these is feeling ill all the time and nightmares.

To the point, has anyone else had these symptoms?
I would appreciate feedback. Thanks

[Carolina]

Dear Vrystaat,

I haven't had orbital pain, which sounds awful, but I do have ataxia related to my profound peripheral neuropathy.

I rather imagine that the orbital pain and ataxia are indeed related to neurological damage from your severely damaged immune system.

I am currently tapering my Medrol (a steroid I have been on, low dose (2 mg) 3.5 years.  I am experiencing pain, depression, fatigue from the taper.  I have told my Immunologist that I will alter her recommended taper protocol and carry out a much slower taper.  I hope that improves my quality of life.

I only go out to exercise in a warm pool, to restaurants, and to doctors' appointments....and to see my family and grandchildren, tho they usually come to me. 

I'm sorry you are having such a terrible time.  Your conditions are far more severe than mine, yet I do understand what it is like to be so disabled and so miserable.

I hope you can find some rest and peace amidst your suffering.

Hugs,  Elaine

[vrystaat]

 
By the way. I have many gripes about my Physicians & Pharmacies:

-Getting the proper drugs is sometimes so difficult
-I need Testoterone and Adderal all the time, and each time I have to re-visit my MD, & she has become upset
-Almost all the MD's I know, are ignorant of this disease. It took 12 years to diagnose me (even at Universities and a so-called leading expert in San Diego).
-This is a serious disease and so many ignorant people say "Oh, it's just dry eyes and dry nose". Right.

Feel free to comment, because I have read all the literature.

[angeldancer]

Hang in there.  We are sending good vibes your way.  A lot of us have been through so much on this journey but realizing pain management is key and some help with the symptoms.  I stop writing because I wanted to feel helpful to others in the midst of my awful flares, lack of support, and horrific symptoms.  If I can just say stay the course.  Many of us have to keep looking for doctors until we find one that will listen.  I will be calling my rheumatologist tomorrow and hopefully he can work me in.  He is the best one so far but still not listening to all my woes.  I feel like a kid wanting to say pain pain go away never come again on any day...but that doesn't seem to work.  Talk with your doctors and see if they can find something to relieve your symptoms.

Good luck and peace and blessings.

[vrystaat]

It,s me once again.
My Rheumatologist, bless her, has referred me to a Neurologist, ENT Surgeon (for spread of infection), and an Immunologist.

I'll report back.

My final comment is about Rheumatologists: they are rare birds, because their pay is so poor, and they have to know so much.
There is little job satisfaction, and Medicare's poor payment ($67 per visit) is ridiculous. My gardener earns more.
My physician is very narrowly focused because of this. This has led to me to travel a very long distance to reach an Academic Center.

[irish]

Sometimes when I doctor gets a low payment for a visit it is because of the coding used for the visit. I don't know how long your visit is but I don't have any doctor who gets less than $100 when I see them. I sort of glance over the paper work that comes weeks later. They have to bill such a large amount in order to get paid even 100$. Irish

[ellieas]

Feel better!!