I had central nervous system vasculitis in 2006 that put lesions on my brain. At first the doctors thought the lesions were cancerous. I spent 10 days in the hospital while doctors tried to diagnose what I had. I didn't recognize my family, couldn't do simple adding and substracting, had debilitating anxiety, couldn't write and didn't really know where I was. I was sent to Mayo Hospital to meet with a neurologist who tested me. My cognitive function was failing me.
Finally a neurologist who had been on-call when I came through ED found a doctor in Minnesota who knew what I had and was willing to treat me. I was put on chemo therapy, Cytoxin I think, to rid my brain of the lesions. I went home and a dear friend stayed with me while I went through the chemo. The chemo was painful, I don't know how to explain it. I couldn't eat even though I had been given medication to ease the nausea. Lost about 30 lbs. Constantly there was almost a burning-like feeling throughout my body. This feeling has subsidied somewhat yet still to this day (2023) I continue to struggle with it. I take gabapentin for it. I went back to work while still on the chemo. That was an ordeal yet I needed my job so off I went. I had applied for Social Security Disability during this time. I had been off of work for 9 months due to this autoimmune disease. I was scared because I still wasn't myself when I went back to work. Gripping anxiety, unability to cognitively function fully. I lived alone since my friend had moved out to help her own family. Horrible nightmares from all the tests I had in the hospital and after. I took a sleeping pill at night so I could get up and work. I could tell I had lost some cognitive ability from the disease and brain lesions. I know I had a brain biospy, a spinal tap, and other unpleasant tests to determine what was going on with me.
Frankly to this day I know I am not cognitively the same person as I was. I hide it yet it has taken it's toll on me.
A couple years after the chemo I found out that this CNSV can attack many different organs in a person' body. Lungs, cause strokes and death. I am grateful I am alive yet to this day I carry this crippling anxiety that the CNSV will come back with even worse symptoms. My daughters reassure me that it won't. The doctor who treated me using Cytoxin told me since I was older (60 at the time) the chances of CNSV recurring was very slight.
Has anyone had CNSV?
How do I handle symptoms that continue to bother me such as anxity, depression, burning feeling inside my body?
I've used medication, talk therapy, exercise, yoga, walking my two little dogs.
I contacted COVID in October 2021 and was hospitalized. I had already had two vaccinations before this happened. COVID hit my lungs with pnuemonia and left scarring in my lungs. Now I have been dealing with Long Covid.
I was hoping to connect with someone else who has had CNSV so I wouldn't feeling so alone and perhaps could give support and receive support. Thank you.
I had central nervous system vasculitis in 2006 that put lesions on my brain. At first the doctors thought the lesions were cancerous. I spent 10 days in the hospital while doctors tried to diagnose what I had. I didn't recognize my family, couldn't do simple adding and substracting, had debilitating anxiety, couldn't write and didn't really know where I was. I was sent to Mayo Hospital to meet with a neurologist who tested me. My cognitive function was failing me.
Finally a neurologist who had been on-call when I came through ED found a doctor in Minnesota who knew what I had and was willing to treat me. I was put on chemo therapy, Cytoxin I think, to rid my brain of the lesions. I went home and a dear friend stayed with me while I went through the chemo. The chemo was painful, I don't know how to explain it. I couldn't eat even though I had been given medication to ease the nausea. Lost about 30 lbs. Constantly there was almost a burning-like feeling throughout my body. This feeling has subsidied somewhat yet still to this day (2023) I continue to struggle with it. I take gabapentin for it. I went back to work while still on the chemo. That was an ordeal yet I needed my job so off I went. I had applied for Social Security Disability during this time. I had been off of work for 9 months due to this autoimmune disease. I was scared because I still wasn't myself when I went back to work. Gripping anxiety, unability to cognitively function fully. I lived alone since my friend had moved out to help her own family. Horrible nightmares from all the tests I had in the hospital and after. I took a sleeping pill at night so I could get up and work. I could tell I had lost some cognitive ability from the disease and brain lesions. I know I had a brain biospy, a spinal tap, and other unpleasant tests to determine what was going on with me.
Frankly to this day I know I am not cognitively the same person as I was. I hide it yet it has taken it's toll on me.
A couple years after the chemo I found out that this CNSV can attack many different organs in a person' body. Lungs, cause strokes and death. I am grateful I am alive yet to this day I carry this crippling anxiety that the CNSV will come back with even worse symptoms. My daughters reassure me that it won't. The doctor who treated me using Cytoxin told me since I was older (60 at the time) the chances of CNSV recurring was very slight.
Has anyone had CNSV?
How do I handle symptoms that continue to bother me such as anxity, depression, burning feeling inside my body?
I've used medication, talk therapy, exercise, yoga, walking my two little dogs.
I contacted COVID in October 2021 and was hospitalized. I had already had two vaccinations before this happened. COVID hit my lungs with pnuemonia and left scarring in my lungs. Now I have been dealing with Long Covid.
I was hoping to connect with someone else who has had CNSV so I wouldn't feeling so alone and perhaps could give support and receive support. Thank you.
@babsg1 You have certainly had a long, difficult road to hoe. I am so sorry. I sort of know how you feel because in 2018 i was diagnosed with lymphocytic lesions on my brain. It’s been a long trip but i am getting better. I, too, was given cytoxan. It helped but I didn’t like it. I went through Mayo Clinic Connect to see if others have had CNSV, but I wasn’t successful. I did find this 1 discussion on CNS lymphoma, where they talk about some of the same issues. You might want to take a look at it. https://connect.mayoclinic.org/comment/791767/
Have you also seen this site? https://www.vasculitisfoundation.org/education/forms/central-nervous-system/
Are you currently being treated?
@good morning @babsg1 I, too, had brain fog after an autoimmune disease caused lesions on my brain. It wasn’t fun, but i got through. There are lots of articles on brain fog—I’ll see if i can find one for you. https://connect.mayoclinic.org/comment/674784/
How long have you had the brain fog? How is your vasculitis being controlled?
I was diagnosed with GPA Vasculitis about 2 months ago. I'm on high dose prednisone and retuximab infusions.
I seem to be feeling better but have a terrible memory and can't put steps together to complete a project. This is a whole new life!
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I had central nervous system vasculitis in 2006 that put lesions on my brain. At first the doctors thought the lesions were cancerous. I spent 10 days in the hospital while doctors tried to diagnose what I had. I didn't recognize my family, couldn't do simple adding and substracting, had debilitating anxiety, couldn't write and didn't really know where I was. I was sent to Mayo Hospital to meet with a neurologist who tested me. My cognitive function was failing me.
Finally a neurologist who had been on-call when I came through ED found a doctor in Minnesota who knew what I had and was willing to treat me. I was put on chemo therapy, Cytoxin I think, to rid my brain of the lesions. I went home and a dear friend stayed with me while I went through the chemo. The chemo was painful, I don't know how to explain it. I couldn't eat even though I had been given medication to ease the nausea. Lost about 30 lbs. Constantly there was almost a burning-like feeling throughout my body. This feeling has subsidied somewhat yet still to this day (2023) I continue to struggle with it. I take gabapentin for it. I went back to work while still on the chemo. That was an ordeal yet I needed my job so off I went. I had applied for Social Security Disability during this time. I had been off of work for 9 months due to this autoimmune disease. I was scared because I still wasn't myself when I went back to work. Gripping anxiety, unability to cognitively function fully. I lived alone since my friend had moved out to help her own family. Horrible nightmares from all the tests I had in the hospital and after. I took a sleeping pill at night so I could get up and work. I could tell I had lost some cognitive ability from the disease and brain lesions. I know I had a brain biospy, a spinal tap, and other unpleasant tests to determine what was going on with me.
Frankly to this day I know I am not cognitively the same person as I was. I hide it yet it has taken it's toll on me.
A couple years after the chemo I found out that this CNSV can attack many different organs in a person' body. Lungs, cause strokes and death. I am grateful I am alive yet to this day I carry this crippling anxiety that the CNSV will come back with even worse symptoms. My daughters reassure me that it won't. The doctor who treated me using Cytoxin told me since I was older (60 at the time) the chances of CNSV recurring was very slight.
Has anyone had CNSV?
How do I handle symptoms that continue to bother me such as anxity, depression, burning feeling inside my body?
I've used medication, talk therapy, exercise, yoga, walking my two little dogs.
I contacted COVID in October 2021 and was hospitalized. I had already had two vaccinations before this happened. COVID hit my lungs with pnuemonia and left scarring in my lungs. Now I have been dealing with Long Covid.
I was hoping to connect with someone else who has had CNSV so I wouldn't feeling so alone and perhaps could give support and receive support. Thank you.
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1 Reaction@babsg1 You have certainly had a long, difficult road to hoe. I am so sorry. I sort of know how you feel because in 2018 i was diagnosed with lymphocytic lesions on my brain. It’s been a long trip but i am getting better. I, too, was given cytoxan. It helped but I didn’t like it. I went through Mayo Clinic Connect to see if others have had CNSV, but I wasn’t successful. I did find this 1 discussion on CNS lymphoma, where they talk about some of the same issues. You might want to take a look at it.
https://connect.mayoclinic.org/comment/791767/
Have you also seen this site?
https://www.vasculitisfoundation.org/education/forms/central-nervous-system/
Are you currently being treated?
I was diagnosed with GPA Vasculitis about 2 months ago. I'm on high dose prednisone and retuximab infusions.
I seem to be feeling better but have a terrible memory and can't put steps together to complete a project. This is a whole new life!
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Like -
Helpful -
Hug
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