timer lady
Queen of Hearts
Heather,
Witz has given you many suggestions that are full of common sense. You know that I have been fighting for a diagnosis ~ to make some sense of what is going on with my body.
I continue to have the same symptoms with no clear diagnosis. While I have many "working" diagnosis's there is nothing that fits one syndrome, disease or disorder. The last time I was at Mayo Clinic both the neuro doctor & the rheum doctor told me how ill I was but they couldn't put a name to my illness. Both of these doctors said that they treat many patients with no clear diagnosis; they treat the symptoms & track things very closely.
And that is what is happening with me. The diagnosis that fits the best is Susac's syndrome but not all the criteria is met for that diagnosis; I may have vasculitis; I may have dermamyosistis or any other number of other disorders. However, I'm being treated for the symptoms & for the pain so I can function.
No one is speaking of recovery anymore ~ we are working out maintenance treatment plans. The priority being my confusion, my vision & severe hearing loss, managing my fatigue & then building my muscular strength. I continue to do my minute laps about my living/dining room 3x daily. In the meantime, my dad & brothers are coming to help husband build a ramp for getting in & out of my home next month.
I guess what I'm saying in a roundabout way is that the symptoms can be treated with-o a clear diagnosis. You will know soon enough if the treatment isn't appropriate.
Like Witz, my GP manages the daily pain medications, the blood work & the communications that need to be handled. The specialists are willing to kick in their opinions for SS purposes if I choose to apply for disability.
I have learned to ask for help ~ I was once a woman who could & would handle any situation thrown my way. Now I need help when I drop my keys & I ask for it. I have learned to gracefully thank those kind people who hold the door open for me rather than get angry. That's difficult for me as I was always a very independent competent woman. I have designated household chores between kt & husband. The ones I can handle I do; sometimes with help, other times I manage on my own.
I have my pity parties; I despair at the stress my illness is putting on my family. I despair at the woman I once was & miss that woman. And I celebrate my good days. You will do the same.
You are in my thoughts & prayers.
Witz has given you many suggestions that are full of common sense. You know that I have been fighting for a diagnosis ~ to make some sense of what is going on with my body.
I continue to have the same symptoms with no clear diagnosis. While I have many "working" diagnosis's there is nothing that fits one syndrome, disease or disorder. The last time I was at Mayo Clinic both the neuro doctor & the rheum doctor told me how ill I was but they couldn't put a name to my illness. Both of these doctors said that they treat many patients with no clear diagnosis; they treat the symptoms & track things very closely.
And that is what is happening with me. The diagnosis that fits the best is Susac's syndrome but not all the criteria is met for that diagnosis; I may have vasculitis; I may have dermamyosistis or any other number of other disorders. However, I'm being treated for the symptoms & for the pain so I can function.
No one is speaking of recovery anymore ~ we are working out maintenance treatment plans. The priority being my confusion, my vision & severe hearing loss, managing my fatigue & then building my muscular strength. I continue to do my minute laps about my living/dining room 3x daily. In the meantime, my dad & brothers are coming to help husband build a ramp for getting in & out of my home next month.
I guess what I'm saying in a roundabout way is that the symptoms can be treated with-o a clear diagnosis. You will know soon enough if the treatment isn't appropriate.
Like Witz, my GP manages the daily pain medications, the blood work & the communications that need to be handled. The specialists are willing to kick in their opinions for SS purposes if I choose to apply for disability.
I have learned to ask for help ~ I was once a woman who could & would handle any situation thrown my way. Now I need help when I drop my keys & I ask for it. I have learned to gracefully thank those kind people who hold the door open for me rather than get angry. That's difficult for me as I was always a very independent competent woman. I have designated household chores between kt & husband. The ones I can handle I do; sometimes with help, other times I manage on my own.
I have my pity parties; I despair at the stress my illness is putting on my family. I despair at the woman I once was & miss that woman. And I celebrate my good days. You will do the same.
You are in my thoughts & prayers.
