CLIPPERS: Looking to connect with others

Hi. I’m curious, how was your biopsy done? Was it by needle into your brainstem? My neuro said mine was impossible to biopsy. My diagnosis was purely based on MRIs and the fact that when they gave me a 1,000 mg shot of Prednisone I immediately began to improve.

Hi. I had numbness in various parts, complete Diplopia, my vision also jumped around crazily (which was worse that the Diplopia), trouble walking, a little trouble swallowing and my speech got really slow. I was really fatigued too. Hmm, I think that was it. It all slowly resolved over 8 months on high doses of Prednisone.

Hi, UK here, I started walking like I was drunk, speaking with a stammer and pins and needles in my left arm and leg which got worse over a few weeks so got my self checked out. After a day of tests and a scan to see if I'd had a stroke they told me I have a brain tumor with sinister results.
I then had a brain biopsy and 2 weeks later a biopsy repair as it didnt quite go right and I was leeking pints of brainstem fluid. A month later was about to start intense cemo to extend my life for 5 years or so before they pulled the plug on it because they now think I have toxoplasma. After a few days in an infectious diseases unit and endless tests I was told oh no its not toxoplasma and we are back to the original diagnosis. Regular scanning over 6 months showed the lesion became 2 lesions both changing in size getting bigger then smaller and bigger again and I'm then told my biopsy had a discrepancy in it and my diagnosis is now "suspected clippers"

They started me on 60mg of Prednisone for 4 weeks which showed improvement. Its currently dropped to 40mg and the symptoms have returned. I'm due to drop to 30mg in 3 weeks and another scan.
I've not worked since June 2023 and my partner now runs our business alone. Although my head looks like it's heeled well it's so numb and sensitive to the touch it feels like it was stiched up yesterday and not 7 months ago 🙁

Although I do not suffer from Clipper, I too have an autoimmune disease (ulcerative colitis) and I can certainly appreciate what you are going through. Don't give up! I was also forced to learn to advocate for myself and learn to ask the right questions, and in many cases get involved in decisions with my doctors. Some are very touchy about this! But if you feel they are not listening to you this is a problem! I'm glad you are getting treatment and it sounds like you are making progress. Good luck!

@luvenlife1 @littlecactus @benjaminuk I’m responding to all of you together. I’ve been on a health leave for the past 2 months so haven’t seen your posts. Sorry! I’m also the one who started this discussion. My journey with CLIPPERS started in 2017 but wasn’t diagnosed until 2018. Maybe it’s my age (76) but I haven’t had an easy time of it. But, I’m so lucky that I have excellent doctors! Do your best to educate yourselves on CLIPPERS so you can work with your doctors and not just follow directions. Be your own advocate! Here are some articles to help you get started:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3927899/
https://pubmed.ncbi.nlm.nih.gov/28386850/
I’ve been on mycophenylate (cell cept) for about 4-5 years but then I developed a severe reaction so was switched to Myfortic. I was also trying to come off of prednisone when new lesions showed up . Darn!
This is why you want to educate yourself. You want to be aware of any changes no matter how small. The doctor won’t know about these unless YOU tell them.

Finding a good doctor is important! I go to a university medical center where I see a neuroimmunologist. She bounces questions off doctors at Mayo Clinic.
You can also contact one of these organizations which can recommend appropriate doctors:
https://rarediseases.info.nih.gov/
https://rarediseases.org/

I’ll do my best to answer your questions!
Becky

Good to have you back online Becky! I didn't realize that you're 76. You go Girl!

Wow, what a journey. I'm sorry to hear it, it sounds like it's been really tough. When I got sick (double vision, couldn't hardly walk) my first MRI was on an old, low-res machine and showed one big lesion. The neurologist said it was likely a brain tumor and very glumly agreed to let me go home and follow up with my primary care physician. I remember standing at the elevator feeling desperate to get out of the hospital and go do "something fun with my remaining time on earth" LOL! I also was thinking, "Well, why not me?" At 55 I was nowhere near done with life but I also felt fortunate for the good life I've had. The next diagnosis was Lyme disease based on a false positive Lyme test. Then my neurologist was at an international conference (purely by coincidence) and when he presented my strange peppered lesions MRI (from a new, high res machine), someone in the back yelled out "It's CLIPPERS". Were it not for that amazing stroke of luck, who knows when I would have been diagnosed. I had a bad crash before we got it all sorted but with my first megadose (1000 mg of Prednisone in the hospital on 3/16/22) I was on the mend and have continued to recover since. I was on Pred for 8 months, did a verrryyy slow taper off. Now I have only vestigial minor symptoms. I attribute the recovery 100% to the initial course of Pred, but I also get a Rituxan infusion every 6 monts. I try to eat healthy but I still eat cookies and drink wine (really should stop). I try to exercise but that's mostly just riding a stationary bike, yoga on YouTube and walking (really should bump that up). The biggest thing I do that's new is live every day with gratitude for being alive and, honestly, I think that's helped a lot. I was a total stress monger before but now I work hard to keep stress under control. I think that stress was the biggest factor in my health getting bad.
I also was unable to work but I had savings thankfully and have been able to return to work since then, although I'm a little bit slower now. Even when I was very sick I tried to do things around the house as my partner had to do more of the business of running our lives. Taking on any chores I could really helped me not feel like a victim. Doing dishes and sweeping the floor with double vision is tricky but worth it. I did have one bad fall (broke a vertebrae in my back) but still, careful movement was very helpful in my recovery.
I know it's weird when people say you're "brave" for continuing along, I mean, what choice do you have? But you ARE brave for keeping on. I really hope you get better. That scar looks pretty metal, so you got that going for you at least.

Interesting, thank you for chiming in. I'm trying to figure out how to get my Rituxan infusions from a private clinic instead of through the hospital. They are due every 6 months and cost a lot even with insurance. Good reminder to be proactive, I gotta get on it for the next one due in June.

My sister n law was just diagnosed with that at Medical City in Dallas

@annia25 Maybe you could help direct yourSIL to this site! She could ask questions and get some hints and advice.
How is she doing now?