CLIPPERS: Looking to connect with others

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 🙂

Welcome to Mayo Clinic Connect. @kristyinoregon . We’re glad that you’re here but not glad that it took Clippers to get you here. Your message did go to everyone and it’s posted here in the discussion group. I know that it took a while to get a diagnosis. Almost ALL autoimmune diseases are like that. And I’m glad you’re not driving yet. Until your eyes are totally normal, driving is the last thing you want to do!
I got osteoporosis and cataracts from prednisone. The cataracts are gone now so I just have the osteoporosis to worry about. You might want to ask your PCP for a referral for a DEXA scan which looks at the health of your bones. And coverup when in the sun! Prednisone makes your skin very susceptible to skin cancer.
So, again, Welcome!

@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

Hello Don,
Interesting that our diagnosis day was just one day different in the same year. Thanks for your advice on the content I posted. I DO need to consider that, for sure, since I have not been a part of social media quite like this before. With regard to my vision, I have a long-term doctor of ophthalmology that I see every 3 months. He knows my eye health well and is working hard to learn what he can about CLIPPERS, while keeping other possibilities in mind. He does regular eye pressure checks and field vision assessments, very thorough. In a January 2024 article in the Journal of Neurology (Li, et al.) indicated that "diplopia" (double-vision) was reported in 51% of patients. My doctor says that "oscillopsia" (which I experience) is very similar to "diplopia", in that they are both two-eye alignment issues. Now that I have said that, I am unsure if I should refer to articles when I am posting to this forum, since I am not a medical professional. However, the article is very good and current, so I lean on it as I am making decisions for my situation.
I am glad to hear you are looking into that second opinion. I think it is completely possible for people to have CLIPPERS, yet have other things going on that are not CLIPPERS. I also consider my diagnosis of CLIPPERS as an "initial" diagnosis, that may not be complete or final. In the article I mentioned above, people seem to be responding positively to Prednisone within several weeks, I have not noticed improvement, but worsening or increase in symptoms. I wonder if symptom sometimes get worse before they gets better, or if I am just slow to respond. I think my Neurologist added Cellcept to increase the efficiency of the Prednisone, so perhaps I just need to be more patient. I guess time will tell.
Thanks for your response to my post. I am looking forward to having access to this platform as I go through this journey, as it seems less lonely and overwhelming when I can hear about others' experiences and interact with them. KRISTY 🙂

Hello my name is Jamie Hughes (52)and I was just recently diagnosed with Clippers. My symptoms started about the end of June 2024. I went to an urgent care with sores in my month. They started me on lidocaine. So I thought the numbness in my face was from that medicine. But as the numbness spread to basically my whole body I got worried. On top of all this I have a 5ml mass on my lungs and have been on and off heavy prednisone since March 1st. So I called my pulmonary dr and he stop my prednisone on July 1, thought I was having side effects from them. On July 3 I fell at home and my speech started getting worse. On July 4 it got pretty bad so I went to the ER. My main symptoms were speech and cognitive skills. Did an MRI and spinal tap and was diagnosed with clippers and started 1g of prednisone. However the infection disease dr stopped that after day four because the tap showed a fungal infection also. Started meds for that and did another tap. After three days it came back negative. So started 60mg prednisone on July 13. To date my speech has straightened out. My cognitive skills are back to about 85% with the left side of my body being the worst, my arms and legs just feel heavy. I do feel lucky in that I was told it would take about 6 months to see a neurologist, however I’m going to UVA today. Nice to be a group of other unique people, as I’m sure you’ve been called also. Just trying to figure out the long term goal, as of right now I would take being able to drive myself.

@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

@suec147 @kristyinoregon
Sue,

Your physical conditions are as close to mine as any I've heard about on Mayor Clinic Connect, which would make each of us very good at understanding what the other is living with! It is hard to explain to non-afflicted persons what it is like. I have also had relapses where these strange sensations start to spread to the other side of my body, but are reversed by steroids. Your eye impairment, however, is much more severe than mine. Hope any spreading to your left eye has stopped and stays away.

Yes, it does seem that finding the right balance of medications is a key objective, with the wrong selections setting one back. After my 17 days in the hospital last October, I went through three Pred packs, each going down to 5mg, before the last of these diminished my strength and well-being so much that it landed me back in a hospital for IV steroids and the conclusion that it was Clippers and that I needed steroids regularly. Been on 20mg daily for about 3 months now and I've been pretty stable. For the last few weeks I've been into lots of exercises of various types and it has gotten me to feel I am getting back to normal. I even fantasize that exercise is the cure for Clippers!

I don't yet have any new input from the doctor I saw at NYU Langone. I will be going down to NYC this coming Monday for a PET CT scan and an MRI Brain Vessel w&wo IVC, which he set up for me. One of the things he wants to check is whether sarcadosis or something else could be a cause of my symptoms. At present I will not have another appointment with him until September 27, unless he comes up with something or my conditions change. I will be happy to keep you informed about his findings.

Meanwhile, thanks for reaching out to me. Comradery in these experiences is a big plus, in my opinion. Have a good weekend, Sue!

Don