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CLIPPERS: Looking to connect with others

Autoimmune Diseases | Last Active: Dec 7 10:15pm | Replies (323)
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@becsbuddy

@liztbnr Wow!! That’s so great!! The doctor may want to repeat all the blood tests, MRI’s, whatever, so they have a really good picture. They may even want a brain biopsy and spinal tap. I had both and they were no big deal. Took some Valium!
Now, you have to come up with all possible questions that you want answered. Write them in your journal with the answers. If you’re not great at note-taking, use the recording device on your phone (get the doctor’s permission!). You can listen later and take notes again.
I’m so excited for you!! Will someone go with you as your 2nd set of ears?

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Replies to "@liztbnr Wow!! That’s so great!! The doctor may want to repeat all the blood tests, MRI’s,..."
liztbnr | @liztbnr | May 5, 2023

It's my baby, so I will take notes. At least I have a start. liz

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menel | @menel | May 16, 2023

Hi, my diagnosis was made through the following:
1. Double vision (diplopia), which was my only symptom.
2. Brain MRI which indicated lesions on the pons of the brain.
3. Two lumbar punches, 6 months apart, through which cerebral spinal fluid (CSF) were extracted. The first CSF contained oligoclonal bands (OCBs) (but not in the serum = blood), while the second did not contain OCBs at all. When I asked my neurologist about this he said that the OCBs, although not present in the second CSF sample, was still an indicator of CLIPPERS.
4. I had lots of other tests, including blood tests, a 12-hour EEG, etc. which indicated all was well.

Here are two articles about CLIPPERS:
https://pubmed.ncbi.nlm.nih.gov/24028073/ This is an abstract of an older article and was shown to me by my neurologist. There is a full version, but it is very technical and should be read by a medical specialist.

https://pubmed.ncbi.nlm.nih.gov/36930124/ This article is again very technical, but I found the prognosis and discussion at the end of the quite understandable.

I hope this info benefits someone.

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