Forcing it.
My poor dear husband. I am trying, but letting go of the remission dream has been hard for me. I snapped at him this morning. Poor man. He has to put up with an always exhausted and now cranky wife.
Of course, there is no one at the neuro's today, so I do not know where I go from here. Treatments that have been tried or considered.
Thymectomy - normal scan and "too old"
Prednisione - Diabetes problems
Imuran - Liver problems
Prograf - Pancreas problems
Rituximab - insurance denied.
IVIG and Mestinon can keep me functioning. But I long to go for walks and play with grandbabies without fear of collapsing.
Thoughts racing though my head to explore - Disability. Maybe then I could get treatment help. Self pay for Rituximab. Cost? Discounted somewhere? Have doctor share european study with insurance...
Thinking out loud guys. Sorry. Been tearful and odd with return of more MG sx and fatigue. Depression?
Of course, there is no one at the neuro's today, so I do not know where I go from here. Treatments that have been tried or considered.
Thymectomy - normal scan and "too old"
Prednisione - Diabetes problems
Imuran - Liver problems
Prograf - Pancreas problems
Rituximab - insurance denied.
IVIG and Mestinon can keep me functioning. But I long to go for walks and play with grandbabies without fear of collapsing.
Thoughts racing though my head to explore - Disability. Maybe then I could get treatment help. Self pay for Rituximab. Cost? Discounted somewhere? Have doctor share european study with insurance...
Thinking out loud guys. Sorry. Been tearful and odd with return of more MG sx and fatigue. Depression?
Replies
Big hug coming your way Debbie. I\'m so sorry things are so tough at the moment xx
Oh Debbie, I\'m so sorry. I bet your husband understands why you are short tempered. (I sure hope mine does when I come unglued and lash out)
Insurance drives me crazy...it makes no sense! IVIG and plex is so expensive for long term maintenance, yet they refuse to pay for rituximab. I would have thought you meet criteria due to not being able to take the other immune suppressants. UGH! Don\'t give up. Is your doctor willing to talk to the insurance MD? (Forgive me as you probably have exhausted all avenues)
Sending lots of hugs and hopes the rituximab can somehow be put back on the table or another path of treatment opens up for you.
hugs and love,
sherry
It is hard when you see yourself worsening and you can\'t get co-operation to fix that. Hang in there and fight!!
It is hard when you see yourself worsening and you can\'t get co-operation to fix that. Hang in there and fight!!
Please challenge your insurance providers decision. I wonder if the MGFA have patient advocates to help get the point across.
I\'m sorry you are having a tough time. I hope the tears help. They do me. Luckily too the depression passes over time. My last bout was about six weeks so I\'ll be discussing it with my docs.
Feel better soon.
hugs,
Larissa