I don’t know anything about CNS but have found great help with my MPA vasculitis with a Facebook support group which includes patients, parents, and spouses. There are several for CNS vasculitis so you might check out all and see which is best for you. Also, check http://www.VasculitisFoundation.org for information and resources. I can be reached by sending me a private message if I can be of further assistance. Molly
Hi Molly @molly48823 - I removed your email address to protect your privacy and keep you from having it added to spam email lists harvested from public forums like Connect. Members can easily share contact information securely by using the private message function on Connect. The Get Started on Connect guide has step by step instructions on using Connect and can be opened from any page on Connect. Just click the Get Started on Connect link in the bottom left footer column of any page. I've included the link for how to send a private message here: https://connect.mayoclinic.org/get-started-on-connect/#send-private-message
I don’t know anything about CNS but have found great help with my MPA vasculitis with a Facebook support group which includes patients, parents, and spouses. There are several for CNS vasculitis so you might check out all and see which is best for you. Also, check http://www.VasculitisFoundation.org for information and resources. I can be reached by sending me a private message if I can be of further assistance. Molly
I don’t know anything about CNS but have found great help with my MPA vasculitis with a Facebook support group which includes patients, parents, and spouses. There are several for CNS vasculitis so you might check out all and see which is best for you. Also, check http://www.VasculitisFoundation.org for information and resources. I can be reached by sending me a private message if I can be of further assistance. Molly
Molly,
Thanks for your reply and the links for more information. My daughter lives in Arkansas, and was diagnosed 5 years ago with Membranous Nephropathy, catastrophic anti phosphoid lipid syndrome and the CNS Vasculitis. All occurring simultaneously in a never sick 15 year old. We did contact the Vasculitis foundation this past summer and got assistance with a neurology appointment in Tennessee quicker than we could in Arkansas. It seems that there is so little known about this type of Vasculitis we aren’t able to find resolutions to help with the daily headaches, CRPS. We have done IV Cytoxan, oral imuran, acupuncture, chiropractic, RFA nerve blocks, and yet she still struggles daily to have a somewhat normal life.
Molly,
Thanks for your reply and the links for more information. My daughter lives in Arkansas, and was diagnosed 5 years ago with Membranous Nephropathy, catastrophic anti phosphoid lipid syndrome and the CNS Vasculitis. All occurring simultaneously in a never sick 15 year old. We did contact the Vasculitis foundation this past summer and got assistance with a neurology appointment in Tennessee quicker than we could in Arkansas. It seems that there is so little known about this type of Vasculitis we aren’t able to find resolutions to help with the daily headaches, CRPS. We have done IV Cytoxan, oral imuran, acupuncture, chiropractic, RFA nerve blocks, and yet she still struggles daily to have a somewhat normal life.
I cannot imagine dealing with all this as a 15 yo or the parents of a 15 yo. Is your daughter now a patient in one of Tennessee’s medical schools? I’m a patient at the U of Michigan medical school which provides my doctors with endless contacts and problem solvers all over the state and country eventually. My sister, who has a rare AI that struck her brain, was able to get into the university system in her state. Getting into one opens doors to resources at all the others. Have you been able to find support for yourself as a caregiver?
Molly,
It has been quite a ride.... that’s for sure. Thank you for your kind words. When she arrived at Arkansas Children’s Hospital with a platelet count of 5 we weren’t sure she was going to make it. We are eternally grateful for their quick intervention with plasmapheresis to help remove the clots. Since our visit to Vanderbilt in September 2020, she has had one appointment at U.T. and is waiting to be scheduled for another. Our whole reason to seek out of state care was the fact we were on a 5 month waiting list in Arkansas and she was having black out episodes with vomiting, and although she could hear us talking.... she was unable to respond for 20 minutes or so. If UT is unable to see her in the next 2-3 months, I need to seek appointment possibilities in Missouri where family lives, or here in AZ where I reside.
I cannot imagine dealing with all this as a 15 yo or the parents of a 15 yo. Is your daughter now a patient in one of Tennessee’s medical schools? I’m a patient at the U of Michigan medical school which provides my doctors with endless contacts and problem solvers all over the state and country eventually. My sister, who has a rare AI that struck her brain, was able to get into the university system in her state. Getting into one opens doors to resources at all the others. Have you been able to find support for yourself as a caregiver?
Going to do some research and will get back to you. Maybe a couple days as we are driving from our house in Michigan to our house in Virginia. 600 miles.
Going to do some research and will get back to you. Maybe a couple days as we are driving from our house in Michigan to our house in Virginia. 600 miles.
Busy packing up this house so haven’t done any research. Have you looked into enrolling your daughter in a clinical trial? I found a few at https://ichgcp.net/clinical-trials-registry/research/list?cond=CNS%20Vasculitis . May find others by googling: CNS vasculitis clinical trials . She does not need to be geographically close as often the study people work with the people in her facility to get the info they need.
Connect
Connect
Like
Helpful
Hug
Hi Molly @molly48823 - I removed your email address to protect your privacy and keep you from having it added to spam email lists harvested from public forums like Connect. Members can easily share contact information securely by using the private message function on Connect. The Get Started on Connect guide has step by step instructions on using Connect and can be opened from any page on Connect. Just click the Get Started on Connect link in the bottom left footer column of any page. I've included the link for how to send a private message here: https://connect.mayoclinic.org/get-started-on-connect/#send-private-message
-
Like -
Helpful -
Hug
3 ReactionsThank you!! Hope you have a great week!
Molly,
Thanks for your reply and the links for more information. My daughter lives in Arkansas, and was diagnosed 5 years ago with Membranous Nephropathy, catastrophic anti phosphoid lipid syndrome and the CNS Vasculitis. All occurring simultaneously in a never sick 15 year old. We did contact the Vasculitis foundation this past summer and got assistance with a neurology appointment in Tennessee quicker than we could in Arkansas. It seems that there is so little known about this type of Vasculitis we aren’t able to find resolutions to help with the daily headaches, CRPS. We have done IV Cytoxan, oral imuran, acupuncture, chiropractic, RFA nerve blocks, and yet she still struggles daily to have a somewhat normal life.
-
Like -
Helpful -
Hug
2 ReactionsI cannot imagine dealing with all this as a 15 yo or the parents of a 15 yo. Is your daughter now a patient in one of Tennessee’s medical schools? I’m a patient at the U of Michigan medical school which provides my doctors with endless contacts and problem solvers all over the state and country eventually. My sister, who has a rare AI that struck her brain, was able to get into the university system in her state. Getting into one opens doors to resources at all the others. Have you been able to find support for yourself as a caregiver?
-
Like -
Helpful -
Hug
1 ReactionMolly,
It has been quite a ride.... that’s for sure. Thank you for your kind words. When she arrived at Arkansas Children’s Hospital with a platelet count of 5 we weren’t sure she was going to make it. We are eternally grateful for their quick intervention with plasmapheresis to help remove the clots. Since our visit to Vanderbilt in September 2020, she has had one appointment at U.T. and is waiting to be scheduled for another. Our whole reason to seek out of state care was the fact we were on a 5 month waiting list in Arkansas and she was having black out episodes with vomiting, and although she could hear us talking.... she was unable to respond for 20 minutes or so. If UT is unable to see her in the next 2-3 months, I need to seek appointment possibilities in Missouri where family lives, or here in AZ where I reside.
-
Like -
Helpful -
Hug
1 ReactionI’m hopeful my reply made it to you.
-
Like -
Helpful -
Hug
1 ReactionGoing to do some research and will get back to you. Maybe a couple days as we are driving from our house in Michigan to our house in Virginia. 600 miles.
-
Like -
Helpful -
Hug
1 ReactionBe safe. Thank you again for your time and assistance.
Busy packing up this house so haven’t done any research. Have you looked into enrolling your daughter in a clinical trial? I found a few at https://ichgcp.net/clinical-trials-registry/research/list?cond=CNS%20Vasculitis . May find others by googling: CNS vasculitis clinical trials . She does not need to be geographically close as often the study people work with the people in her facility to get the info they need.
Have you seen this article? https://themighty.com/2016/11/message-to-people-with-rare-or-undiagnosed-diseases-from-researcher/
-
Like -
Helpful -
Hug
3 Reactions