Hi All,
I have been off the board for a awhile during the summer for us to go on vacation and move in to my aunt's house, which is the home I actually grew up in. We moved since I had to stop working in June due to the pain an fatigue of my disease. The specialist at Hopkins was only able to diagnose me with UCTD due to my inconclusive lip biopsy, until today. Today, due to a recent flare of uncontrollable neuropathic pain, he has finally diagnosed me with Sjogren's, which he thought I had in the first place.
Now, he is sending me for a special MRI of my nerves and a spinal tap to help determine if I need to go on IVG or immunosuppressants. I am both relieved and concerned about the next steps. He says I will always have chronic pain, but the goal is to keep it at a level 3 or 4, and I am not sure how I feel about that reality. I have been living with a certain level of pain for more years than I can remember, and I suppose there was a part of me that was still holding out hope for relief if I had to live through treatment with side-effects. I do know how naive that sounds, but I think we all have that little spark of hope inside of us when we are first being diagnosed . . .
I am sure I will be looking to all of you for support and information as I go through the next steps in this process. I am so grateful to have this community to turn to at this time.
Hi Vasha, welcome back!
It is never easy to live with pain and I think having hope is what can get us through the tough parts.
It sounds like your doctor is on top of treatments and options for you so that is good. Please keep us posted as you continue through your tests and treatment options.