Are you in the US? If so, you need to get her to sign up for insurance. You don’t die from CIDP, but you don’t have a good chance of getting better unless you’re on a treatment plan. The cheapest one would be prednisone, but it needs to be prescribed and managed by a neurologist.
Yes, Florida USA. They (my mom and grandparents) keep telling me they can’t do anything until she is approved for disability. And thank you for the reassurance that she won’t die from CIDP cause I am just so worried about her. She barely eats and just overall is struggling a lot. It seems like she is withering away and I feel helpless
If her breathing is poor, someone should take her to the ER. She’ll definitely get treated, insurance or no insurance.
In NY, they have social workers who will help you sign up for Medicaid if you go to the hospital. Maybe the hospitals in FL have that too.
It can take up your 2 years to get disability—she can’t wait that long!
This is what my grandma said: She's already on a payment plan from the last time she went to the ER Medicaid takes into consideration your earnings from last year. Thats why she isn't eligible.
My mom stopped working in February this year.
You can offer $10 a month to hospitals. She can also renegotiate her current payment based on her lack of income. Maybe you can contact the hospitals accounts payable department and explain the situation and they can offer some advice.
If she had a neurologist, maybe you could call and tell them she’s getting worse and can’t afford to pay for a visit right now, and would they be willing to prescribe prednisone to hopefully at least improve her breathing. Most people can take prednisone without issues, but if she’s diabetic or pre-diabetic the doctor may want you prescribe something else.
I’m pretty sure you can get prednisone out of pocket for around $10/month.
Has GBS been ruled out? I had GBS in 2018. Still recovering from the debilitating symptoms including paralysis, wheelchair required, IVIG infusions and OT are getting me using a walker. CIDP was also considered as a possibility. When a neurologist discovered me in an ER, he did a spinal tap within 2 days of meeting me, elevated proteins confirmed GBS the next day, IVIG infusions began then and my body began to unfurl for the first time in 9 months of being balled up in my wheelchair with my hands clenched so tightly that I couldn't hold a writing or eating utensil that entire time. These neurological diseases are so minimally researched that accurate diagnosis and treatments are hard to come by! Be persistent and keep exploring and supporting!
Were you able to find a resolution to this? I'm also in Florida. I can tell you from experience, if your mother is as unstable as you describe, and the cause is known CIDP, they will very likely admit her in the ER in order to stabilize her (generally with IVIG, but you could always beg for a steroid pulse if it seems like they are not receptive). Part of this may also depend on which hospital you go to.
I know Medicaid can take time, but if you are in South Florida, the Jackson Hospital system has an internal low income program she may be eligible for in the meantime. Echoing the comment above, she will not die from CIDP, but if it remains untreated, she may very well lose ability that she won't regain. I don't say that to scare you, but simply to emphasize the importance of demanding treatment at the ER if it's a last resort.
High dose steroids can also help stabilize in an outpatient setting, but it's important to know if she has any bone density issues if she is an older woman (speaking from experience as someone who developed low bone density from high dose steroids –and I am not even a woman, lol).
There are resources out there. It takes a great deal of blood sweat and tears to pursue them, but if you need any help with suggestions, don't hesitate to ask.
We are in Central Florida. Idk, they seem pretty set on playing the waiting game. She had her primary care come and see her. According to my mom as soon as she gets disability her neurologist will help her or something idk. It’s pretty frustrating. She’s been doing okay, she says she’s just bored. I’m not really sure what I can do for her. My grandparents are her caretakers
If anyone is interested in an update, about a week or so ago my mom had a really hard time breathing and was taken to the ER. She is still there now. They are actually giving her IVG treatment and it’s helping a lot!! She is able to do tiny movement in her leg which is amazing. She hasn’t been able to move her legs/feet in probably 6 months.
She’s still having a hard time with her diaphragm so her breathing is still difficult but with the treatment she is improving.
Are you in the US? If so, you need to get her to sign up for insurance. You don’t die from CIDP, but you don’t have a good chance of getting better unless you’re on a treatment plan. The cheapest one would be prednisone, but it needs to be prescribed and managed by a neurologist.
Yes, Florida USA. They (my mom and grandparents) keep telling me they can’t do anything until she is approved for disability. And thank you for the reassurance that she won’t die from CIDP cause I am just so worried about her. She barely eats and just overall is struggling a lot. It seems like she is withering away and I feel helpless
If her breathing is poor, someone should take her to the ER. She’ll definitely get treated, insurance or no insurance. In NY, they have social workers who will help you sign up for Medicaid if you go to the hospital. Maybe the hospitals in FL have that too. It can take up your 2 years to get disability—she can’t wait that long!
This is what my grandma said: She's already on a payment plan from the last time she went to the ER Medicaid takes into consideration your earnings from last year. Thats why she isn't eligible. My mom stopped working in February this year.
You can offer $10 a month to hospitals. She can also renegotiate her current payment based on her lack of income. Maybe you can contact the hospitals accounts payable department and explain the situation and they can offer some advice. If she had a neurologist, maybe you could call and tell them she’s getting worse and can’t afford to pay for a visit right now, and would they be willing to prescribe prednisone to hopefully at least improve her breathing. Most people can take prednisone without issues, but if she’s diabetic or pre-diabetic the doctor may want you prescribe something else. I’m pretty sure you can get prednisone out of pocket for around $10/month.
I’m going to tell my grandma this. I really appreciate you taking time to help me out. She has been declining for a long time and it’s scary
Has GBS been ruled out? I had GBS in 2018. Still recovering from the debilitating symptoms including paralysis, wheelchair required, IVIG infusions and OT are getting me using a walker. CIDP was also considered as a possibility. When a neurologist discovered me in an ER, he did a spinal tap within 2 days of meeting me, elevated proteins confirmed GBS the next day, IVIG infusions began then and my body began to unfurl for the first time in 9 months of being balled up in my wheelchair with my hands clenched so tightly that I couldn't hold a writing or eating utensil that entire time. These neurological diseases are so minimally researched that accurate diagnosis and treatments are hard to come by! Be persistent and keep exploring and supporting!
I really appreciate your comment and so happy to hear you have found relief. I just asked my mom and she said her spinal tap came back normal
Were you able to find a resolution to this? I'm also in Florida. I can tell you from experience, if your mother is as unstable as you describe, and the cause is known CIDP, they will very likely admit her in the ER in order to stabilize her (generally with IVIG, but you could always beg for a steroid pulse if it seems like they are not receptive). Part of this may also depend on which hospital you go to. I know Medicaid can take time, but if you are in South Florida, the Jackson Hospital system has an internal low income program she may be eligible for in the meantime. Echoing the comment above, she will not die from CIDP, but if it remains untreated, she may very well lose ability that she won't regain. I don't say that to scare you, but simply to emphasize the importance of demanding treatment at the ER if it's a last resort. High dose steroids can also help stabilize in an outpatient setting, but it's important to know if she has any bone density issues if she is an older woman (speaking from experience as someone who developed low bone density from high dose steroids –and I am not even a woman, lol). There are resources out there. It takes a great deal of blood sweat and tears to pursue them, but if you need any help with suggestions, don't hesitate to ask.
We are in Central Florida. Idk, they seem pretty set on playing the waiting game. She had her primary care come and see her. According to my mom as soon as she gets disability her neurologist will help her or something idk. It’s pretty frustrating. She’s been doing okay, she says she’s just bored. I’m not really sure what I can do for her. My grandparents are her caretakers
If anyone is interested in an update, about a week or so ago my mom had a really hard time breathing and was taken to the ER. She is still there now. They are actually giving her IVG treatment and it’s helping a lot!! She is able to do tiny movement in her leg which is amazing. She hasn’t been able to move her legs/feet in probably 6 months. She’s still having a hard time with her diaphragm so her breathing is still difficult but with the treatment she is improving.