I'm out of patience, persistence and acceptance!

[vrystaat]

I'm a physician and have seen all the best Rheumatologists on the West Coast. My initial symptoms of profound fatigue and leg pains, were ignored and misdiagnosed by many academic centers, including UCLA, UCSF and Scripps Clinic in San Diego for over 10 years. The only interested physician was a nice Rheumatologist in Beverley Hills. He immediately put me on Prednisone and Imuran (11 years after I became ill). In those days, the whole medical world was ignorant of Sjogrens Syndrome. The fatigue led to poor job performance and anger by my colleagues. I was fired from three jobs, and had extreme difficulty getting my Disability Insurance to pay. I started retaliating with lawsuits, and won all of them. Five years ago, I experienced a rapid deterioration: ataxia, loss of balance, Trigeminal Neuralgia, severe arm and leg pain, dryness, eye pain, mindless fatigue and Sjogrens fog. Finally, a smart lady Rheumatologist diagnosed me. All my Lab tests were positive. For years my CPK (muscle enzymes) were high, with no diagnosis. This lady diagnosed me as Polymyositis. Diagnoses are fine, but treatment is a different story. I have failed IVIG, Methotrexate, Imuran, Prednisone and Cellcept. I need Adderall or Provigil every day for fatigue and confusion. I only use a Medrol Dose Pack (5 days of steroids) from time to time. No one at this Rheumatologist's office likes to use Retuxan, due to its severe side effects. Well that's my story. Please write for questions. I have been through it all.

[Nomad]

Vrystaat...that is an amazing story. Very sad that you went through so much. Please check here often. You can be a huge help to all of us.

I can tell you that I just moved to a new city. This is frustrating on a variety of levels. I had just begun to make a little headway with my GP at my previous location who initially felt Sjogren's Syndrome was a matter of dry eyes and dry mouth only. Right before I left, she acknowledged what I had been saying...that this illness was much more pervasive that simply dry eyes and dry mouth.  My rheumatologist at my old location barely had any interest in Sj. Syndrome.

Now, I'm at  a new location. The new GP and hematologist have the stereotypical view that Sj. Syndrome is simply dry eyes and dry mouth. I haven't seen the new rheumatologist as of yet, but I'm NOT optimistic.

With the new GP, I have alluded to having "autoimmune stuff" and surprisingly she reacts more positively or interested if I use this vague wording than if I mention Sj. Syndrome specifically.

As a side note: Sorry to read you have TN.  Horrible.  I have atypical trigeminal neurgalgia that came after some weird dental procedures...at first it was HORRENDOUS.  More manageable now.

Caroline....hugs, hugs and more hugs.

[aussie mum]

I understand your feelings completely and relate to everything on your list.

Especially pain..... I am sick of being in pain.....every..minute..of..every..day !

While I don't have SJS, I also live with the guilt that I passed on the joys of auto immune illnesses to my daughter. Diagnosed with SJS at 16 

[finallyadx]

Totally there with you...no patience for my illness, medications, drs visits, feeling sick most of the time, not finding much relief and the lack of empathy or minimally understanding from those around me.  I have a sister who has cancer and I have been helping her for the last six months trying to keep her in her house that she loves while she is fighting the cancer "beast", but I must admit it has wreaked havoc on me and my health.

I took an online survey the other day that someone on this website posted about...wouldn't it be great if there were some new options for us to try?

Here's hoping the patience and understanding and RELIEF of symptoms if only for a few days returns.

Keeping positive thoughts and prayers your way.