Today my neuromuscular doc (Dr. Sivakumar) called me. It's the second time he's called to discuss the details of my case. I don't think a doctor has ever done that. I'm starting to feel very hopeful, because he is very smart and he's really focusing on getting answers for me. I think there's a good chance he'll solve this! Really hoping so. Here's what he had to say.
First off, he called to answer some questions I had asked the nurse about labs he ordered (normally the nurse just calls you back with the answer). He wanted to discuss, because he wanted to explain why they are so important (they are going to cost almost $1,000 because they have to go through the Mayo clinic and its out of network. Ouch.)
He said if the angiogram comes back negative (disproving a tumor and disproving a vascular lesion) then he would likely classify my condition as a non-paraneoplastic autoimmune encephalopathy. Basically, that's a general term that means disease of the brain, caused by a non-cancerous, autoimmune condition. He mentioned several specific antibodies he wants to look into, including the anti-VGKC antibody test that recently turned up positive. We have to repeat it, because we can't call it a true positive unless it turns up twice, at two different times, in two different labs.
Interesting...
The most interesting thing he said was that he has been researching those anti-VGKC (voltage gated potassium channel). He said if this is truly positive it could explain everything. He said that a condition like this could account for all of my symptoms AND my brain lesions. He said he previously knew there were cases with brain lesions, but he had always known them to be symmetrical. He said he has be researching (so amazing!!) and there are definitely cases that present with asymmetrical brain lesions. He said the fact that my three brain lesions have been enhancing for years is also consistent with this diagnosis. So he said if the angiogram doesn't reveal a tumor or vascular lesion or lymphoma, and if the spinal tap reveals nothing, then he would be inclined to think this was the diagnosis (an autoimmune encephalopathy, caused by those anti-VGKC antibodies). I am sooo happy that someone is considering what could tie all this together, and spending time researching. It makes me feel so much better about how things are progressing. This doctor is an answer to our prayers, a whole new level of specialization and care. Thanks to everyone who is praying for us! <3
Possible Treatment...
He says the tests tomorrow (angiogram and spinal tap) are very important (obviously) because they will hopefully confirm or exclude the diagnoses of tumor or vascular lesion, etc.
He says if those two things are ruled out, and if my blood panel confirms the VGKC antibodies, he will move to start me on IVIG treatments for three months. (IVIG, He said in cases of people with this VGKC condition that have reacted poorly to steroids (doctors never catch this detail...steroids make my condition so much worse!) He said that in those cases, patients will usually respond well to plasmapheresis (plasma exchange--i did this, with no improvement), or IVIG treatments (an . He says he would like to try me out on IVIG treatments for three months. But he says we have to justify it to the insurance, and one of the ways we need to do that is running that expensive panel of labs to prove this is what we are dealing with. He said if this is the diagnosis, he is quite certain this treatment would help, with the growing brain lesion and with the symptoms.
Tomorrow
Feeling really anxious for my tests tomorrow. Just the idea of the angiogram creeps me out. And the spinal tap is not my favorite, I've had one before and it gave me a migraine for five days. I thought I was going to die from a headache. I'm sure this one will be better, but I'm just getting those pre-test nerves. Ugh. Hopefully we'll get some answers. More soon. I'm grateful for this doctor who is so invested in my case. I'm feeling really confident that he's going to figure this out. Can't wait!
First off, he called to answer some questions I had asked the nurse about labs he ordered (normally the nurse just calls you back with the answer). He wanted to discuss, because he wanted to explain why they are so important (they are going to cost almost $1,000 because they have to go through the Mayo clinic and its out of network. Ouch.)
He said if the angiogram comes back negative (disproving a tumor and disproving a vascular lesion) then he would likely classify my condition as a non-paraneoplastic autoimmune encephalopathy. Basically, that's a general term that means disease of the brain, caused by a non-cancerous, autoimmune condition. He mentioned several specific antibodies he wants to look into, including the anti-VGKC antibody test that recently turned up positive. We have to repeat it, because we can't call it a true positive unless it turns up twice, at two different times, in two different labs.
Interesting...
The most interesting thing he said was that he has been researching those anti-VGKC (voltage gated potassium channel). He said if this is truly positive it could explain everything. He said that a condition like this could account for all of my symptoms AND my brain lesions. He said he previously knew there were cases with brain lesions, but he had always known them to be symmetrical. He said he has be researching (so amazing!!) and there are definitely cases that present with asymmetrical brain lesions. He said the fact that my three brain lesions have been enhancing for years is also consistent with this diagnosis. So he said if the angiogram doesn't reveal a tumor or vascular lesion or lymphoma, and if the spinal tap reveals nothing, then he would be inclined to think this was the diagnosis (an autoimmune encephalopathy, caused by those anti-VGKC antibodies). I am sooo happy that someone is considering what could tie all this together, and spending time researching. It makes me feel so much better about how things are progressing. This doctor is an answer to our prayers, a whole new level of specialization and care. Thanks to everyone who is praying for us! <3
Possible Treatment...
He says the tests tomorrow (angiogram and spinal tap) are very important (obviously) because they will hopefully confirm or exclude the diagnoses of tumor or vascular lesion, etc.
He says if those two things are ruled out, and if my blood panel confirms the VGKC antibodies, he will move to start me on IVIG treatments for three months. (IVIG, He said in cases of people with this VGKC condition that have reacted poorly to steroids (doctors never catch this detail...steroids make my condition so much worse!) He said that in those cases, patients will usually respond well to plasmapheresis (plasma exchange--i did this, with no improvement), or IVIG treatments (an . He says he would like to try me out on IVIG treatments for three months. But he says we have to justify it to the insurance, and one of the ways we need to do that is running that expensive panel of labs to prove this is what we are dealing with. He said if this is the diagnosis, he is quite certain this treatment would help, with the growing brain lesion and with the symptoms.
Tomorrow
Feeling really anxious for my tests tomorrow. Just the idea of the angiogram creeps me out. And the spinal tap is not my favorite, I've had one before and it gave me a migraine for five days. I thought I was going to die from a headache. I'm sure this one will be better, but I'm just getting those pre-test nerves. Ugh. Hopefully we'll get some answers. More soon. I'm grateful for this doctor who is so invested in my case. I'm feeling really confident that he's going to figure this out. Can't wait!
No comments:
Post a Comment