The 13 vials of blood came back negative for every antibody and every thing else tested except for my ANA, which was low.
It still amazes me that I definitely have a goiter on my thyroid and yet not a single antibody to prove it’s there. I am atypical they say.
Seems to somewhat amaze my docs as well. So many signs of autoimmunity and inflammation with no pathological or serological proof.
In this case…
- Since I’ve tested positive once for the SSA antibody (Sjogren’s) this supports a mild Sjogren’s diagnosis.
However, mild Sjogren’s doesn’t account for the positive neurological signs my body shows. Few but more severe cases of Sjogren’s have a neuro component.
- My Gallium Scan showed no “hot spots”. None of my salivary glands or tear ducts showed inflammation. None of the areas of my body showed inflammation. The hot spots would have helped me get a slam dunk Sjogren’s diagnosis. This means I will likely have a lip biopsy to try to confirm the Sjogren’s rather than a parotid or submandibular biopsy.
- My MRI showed no signs of inflammatory disease.
They are not sure what to do next.
The Big Nothing. Again.
I want to cry until my tears run out and scream until my voice quits on me.
After that, I want to do many things my body simply can’t do.
No answers = no treatment
No treatment means that on an average day of doing average activity, my left foot drags on the ground. The more I walk, the more my foot slaps the ground and the more likely I am to fall. The more I walk, the more I limp and the more I limp, the less I can walk. My body simply can’t make the movements. With my right arm, I am now experiencing similar symptoms. I am right-handed. There’s pain involved but I can live with that if I’m living more.
I want to take a shower without needing help to wash my hair.
I want to go for a walk.
A run would be amazing.
A day trip would be so fun.
Up and down the stairs to do laundry would be helpful.
I want to feel refreshed. Alert. Competent. Lively.
I want to be the strong, sharp businesswoman I once was. Now, I mostly pretend.
I want to have the strength to carry my laptop.
Strength to pick up my little big boy for a full body hug.
Strength to accept that I will never be able to do these things.
I know intellectually that in the large scope of things, this is not the end of the world. Right now, it sure feels like it.
The supportive and kind words from readers of my little blog mean so much. Tonight, I want to post alone. Thank you for accepting my need for solitude.
Filed under: Uncategorized Tagged: | autoimmune, undiagnosed chronic illness
