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CLIPPERS: Looking to connect with others
Autoimmune Diseases | Last Active: Dec 7 10:15pm | Replies (323)Comment receiving replies
Becky, Please let me know if this went to the whole group, or just to you. I meant it for the whole group, but not sure how it all works yet. Thanks. 🙂
Hello Everyone,
Over the past month or two, I have been reading through all of your posts, starting back with Moderator/Becky’s first post. It has been very helpful to read everyone’s experiences and questions. And, the commonalities, as well as the variation of symptoms that CLIPPERS decides to share with each one of us. I am finally feeling brave enough to share. So, here goes:
I am 58 years old and live in Banks, Oregon (west of Portland). I am thankful to have a loving husband and two adult children. I am a special education teacher. I was diagnosed with CLIPPERS by an OHSU Neurologist on May 2nd, 2024. My Neurologist has had two CLIPPERS patients in a previous practice/another state. I am currently taking Prednisone 50mg (down from 60) and Cell-Cept added 6/10.
Neurologist Visits so to current:
April 16, 2024 - Initial visit
May 2, 2024 - Follow up and Initial diagnosis. Next was scheduled for July 8th.
June 10, 2024 - Was able to get appointment before July due to an increase of symptoms and ER visit on May 28th. Added Cell Cept, advised to see primary physician to get BP meds, and ordered another MRI. Currently waiting for MRI results. Should have in a couple of days.
Next visit will be July 8th.
The lead-time up to my diagnosis took nearly a whole year. It felt very long and so unclear, but we are finally narrowing in. I will provide a separate post to list symptoms and chronicle the one year of appointments, frustration, exhaustion, worry and waiting to get into see the Neurologist, if anyone is interested. Here is what we know and have done from April 16th through current:
Tests Before the First Neurology Appointment:
Vestibular Study/Balance - 2/21/2024 Showed definite problems with brain/eye response to vestibular stimulation that should cause “eye saccades”. My saccade readings were way below normal, from very low to no response at all. The specialist and Dr. B said that either my cochlea was really messed up, or something was happening/not happening between the cochlea and the brain.
MRI - 2/22/2024 and 3/22/2023 - Showed lesions scattered throughout the Central PONS (“salt & pepper” effect visually) and brain inflammation. Cochlea and surrounding areas, both ears, are completely normal/intact, even all of the little “hairs”/nerve receptors. No tumors or masses in the brain.
Tests After the First Neurology Appointment:
Blood work - 4/16/2024 and Lumbar Puncture/Spinal Tap - 4/18/2024
These two tests analyzed together have so far ruled out MS and many other possible culprits.
Second Visit to Neurologist/Initial Diagnosis - 5/2/2024
CLIPPERS (so I guess that makes me a “Clipperhead”)
Prescribed:
60mg prednisone, to reduce by 10mg every 30 days until 20 mgs.
Visit to eye doctor, since I have long-time high eye pressure and take medication for glaucoma. Long term Prednisone can increase blood pressure and eye pressure/Glaucoma.
Take Calcium supplement. Long term prednisone can cause Osteoporosis.
Increase water intake/stay hydrated to help meds work and body heal.
Consider no alcohol, decrease salt, sugar
And, since I had 4 episodes of what I now know to be “Oscilopsia” (temporary loss of visual alignment which cause everything in my vision to slant one direction and look all pixelated for 30 seconds to 1 minute) - NO DRIVING. Wham! Ugh! Oooof !!
She didn’t say I had to take time off work, but my work is not close to my home and I was so worn out, and had no energy/desire to figure out transportation, I took time off work. I ended up being off for a total of 6 weeks. I “returned” (virtually) on May 8th to support the long term substitute with meetings and all the paperwork that happens at the end of the school year for SpEd teachers. I am no on Summer Break. Whew!
I promise my posts will not always be this long. I will now post my Chronical to Diagnosis and my symptoms list. after that, I will put longer stuff in my profile. I haven't set that up yet. Will do. KRISTY 🙂
Replies to "Becky, Please let me know if this went to the whole group, or just to you...."
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@kristyinoregon
Kristy, thanks for your post, which is the most extensive summary of a Clippershead's medical path I have seen. Since Mayo Clinic Connect is a purely social media-like exchange platform for sufferers of all kinds of conditions, without any moderation or intervention by anyone medically-certified (unless they are also suffering something), your summary may be more than needed. I could be quite mistaken about this. You'll have to judge it yourself.
I was diagnosed as being a Clippers member on May 3, 2024, one day after you! My symptoms began in September 2024 and began with extensive visual impairment of my left eye and parathesis of my left hand before extending to parathesis of the left arm, left chest, left leg and left foot, and the same with my left jaw and the left side of my face. The left side of the body ones have softened a little and vision in my left eye improved greatly. I've gone through two hospitalizations where steroids delivered by IV were the main and successful treatment. I am now on 20 mg prednisone, with my neurologists planning to move me off them in the months ahead.
I had an intensive consultation and evaluation of my complete medical record a few days ago with a second opinion neurologist at the NYU Langone MS Center. This doctor said my condition was complex and puzzling. He thought a diagnosis of Clippers might not be accurate, even given my responsiveness to steroids, because eye impairments are extremely rare amongst those with Clippers. He is proceeding with new blood tests and procedures to help determine if something else is causing some or all of my symptoms. I found his evaluation to be extremely productive and helpful.
Might this apply to you? Who knows. You had or still have visual field infringements too, although perhaps less profound that mine. Or maybe you and I are the "extremely rare cases" where Clippers patients have had eye problems, making Clippers the right diagnosis.
In any event, welcome to the Clippers portion of Mayo Clinic Connect. Like you, I am not sure how aspects of this social platform works, but if it proves of benefit, as it definitely has for me, it is worth the uncertainty. Don