1000 mg and a insulin drip right now ... he also is on methatrcate if i spelled that right . For sarcoidosis then later with in months we found he also has neurosarcoidosis do far thebonly trestment is the 1000 mg steriods
You have had this for 8 years, tell me what to expect please,. Right now we deal with seizures, anger out bursts, confusdion, memory loss , vision loss
This is Tammi my husband is Chesney he has neurosarcoidosis what to expect. This is what i know. He now has seizures cranky to mean sometimes but pain plays a role, he gets confused gets lost in the back yard, eye site is bad, he don't like the food I cook nor the smell ,. Too many things going on at one time will drive him crazy I have to try and treat him like he has autism. He can't handle company. Questions and me cooking at one time it's too much
I noticed your post. I had sarcoidosis nodules removed from my lungs many years ago. Nothing more was said about it till recently. I had Lyme disease and have had dizziness and other problems for about two years. The neurologist is thinking the Lyme and sarcoidosis might be the cause of my problems. I have to have a spinal tap. I have been reading about neurosarcoidosis. I have a lot of pain in my neck and back of my head but it doesn't feel electric. I am interested to know more about your situation. I wish you well.
Hi @diocras,
I'd like to also add my welcome. You'll notice that I moved your message to an already existing discussion about neurosarcoidosis where you will meet Chesney and Dade.
Like Ryman, we look forward to getting to know more about you. Is neurosarcoidosis a new diagnosis for you?
Is this board still active? If so, i am looking for good nutritional recommendations to help with neurosurgical. I was diagnosed 11 years ago and was on steroids for about 9 years. I am on methotrexate now. I want to eat to support my condition. I already do salmon, lots of veggies and fruit. Looking for other nutritional info.
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1000 mg and a insulin drip right now ... he also is on methatrcate if i spelled that right . For sarcoidosis then later with in months we found he also has neurosarcoidosis do far thebonly trestment is the 1000 mg steriods
You have had this for 8 years, tell me what to expect please,. Right now we deal with seizures, anger out bursts, confusdion, memory loss , vision loss
This is Tammi my husband is Chesney he has neurosarcoidosis what to expect. This is what i know. He now has seizures cranky to mean sometimes but pain plays a role, he gets confused gets lost in the back yard, eye site is bad, he don't like the food I cook nor the smell ,. Too many things going on at one time will drive him crazy I have to try and treat him like he has autism. He can't handle company. Questions and me cooking at one time it's too much
neuro sarcoidosis and feel electric in head
I noticed your post. I had sarcoidosis nodules removed from my lungs many years ago. Nothing more was said about it till recently. I had Lyme disease and have had dizziness and other problems for about two years. The neurologist is thinking the Lyme and sarcoidosis might be the cause of my problems. I have to have a spinal tap. I have been reading about neurosarcoidosis. I have a lot of pain in my neck and back of my head but it doesn't feel electric. I am interested to know more about your situation. I wish you well.
Hi @diocras,
I'd like to also add my welcome. You'll notice that I moved your message to an already existing discussion about neurosarcoidosis where you will meet Chesney and Dade.
Like Ryman, we look forward to getting to know more about you. Is neurosarcoidosis a new diagnosis for you?
I'm currently being tested for it. What were your symptoms.
What tests are done for this?
Hello, @stoughtenger - welcome to Mayo Clinic Connect. Here is some general information about sarcoidosis from Mayo Clinic https://www.mayoclinic.org/diseases-conditions/sarcoidosis/symptoms-causes/syc-20350358.
Also, the National Institutes of Health has this information on research being done for neurosarcoidosis https://www.ninds.nih.gov/Disorders/All-Disorders/Neurosarcoidosis-Information-Page
Is this a diagnosis your doctor is considering for you?
Is this board still active? If so, i am looking for good nutritional recommendations to help with neurosurgical. I was diagnosed 11 years ago and was on steroids for about 9 years. I am on methotrexate now. I want to eat to support my condition. I already do salmon, lots of veggies and fruit. Looking for other nutritional info.