CLIPPERS: Looking to connect with others

Well, Graeme @dustymi11er , funny you should ask! I’m retired now, thank heavens. I couldn’t have worked when i first go sick—it took me 3 months just to be normal. I was hit pretty hard with clippers and had to go to rehab for a month. Everyone is totally different.
The biggest problem with autoimmune diseases is fatigue—you have to learn to work with it.
This article explains fatigue and the theory that developed from it.
https://www.brainsupportnetwork.org/explaining-fatigue-the-spoon-theory/
You sound determined to get your old self back. Are you working with physical or occupational therapy while you’re home off work?

Greetings! Ame in sunny San Diego, California here. I am putting in some quick notes and then I'll come back and write more after work.
Firstly Graeme, I want to tell you that 5 months after going down this rabbit hole, I am back to working full time, working out (weights, cardio, cycling, hiking) and generally living my normal life. I am 55 and was quite fit before all of this. My symptoms began on Feb. 9th, I was hospitalized twice. The second time I was quite chuffed to wake up the next morning as my symptoms had crept into the autonomic area of the brainstem which controls swallowing, sleep, etc. so my doctor was very concerned. However, I have steadily improved...so take heart!
I've just been on Prednisone so far. Two 3-day pulses of 1000mg/day and then tapering down. I'm on 20mg/day now. My balance was super messed up, my vision was very doubled and it jumped all around, and I had numbness and weakness in various odd spots. All of that resolved slowly over time. The vision took the longest but it steadily got better and now I only have double vision when I get tired or eat too much sugar and/or salt. I have a lot to tell you but I'll have to come back as I'm supposed to be working (lol!). For me it's hard to discern the CLIPPERS symptoms from the Prednisone side effects but I'll try to share some of my observations. Here are 10 quick pieces of advice, I hope you find something helpful in them:
1. Take the Prednisone (or whatever immune suppressant you're on) at the same time every day. Take it early in the day and with food.
2. Rest A LOT. The Pred made me super high and I wanted to do stuff. Staying physically active is good (stretching, walking when safe, just moving about) but don't be an idiot like me and make it worse by not resting enough.
3. Drink TONS of water. It helps with the medication side effects.
4. If you have balance issues, be very careful. I was quite casual about it and I had a bad fall. I've never fallen in my life, I'm usually very sure footed. Be extra careful, even if you feel like you're fine walking. I used a walking stick and it was really helpful (like one of those sticks you take hiking). If you don't have one, see if someone can get you one from an outdoors store. I used mine for a few months.
5. Contrary to info I found online, it did NOT help my double vision to cover one eye. It made it much worse. I just sucked it up and got used to seeing everything double. Believe it or not, your brain will adapt and it gets easier. I also was able to read, text, work on the computer a bit for several months by doing everything up close. Some days I could see up close okay but everything was doubled far away. On the days when it was reversed I had to just rest. Even now I find that my symptoms can change from day to day.
6. About work, I'm self-employed (work on the computer) and I was unable to work for about 3 months (lived on savings). As you're no doubt learning, not much is known about CLIPPERS but from the cases I've seen and my own experience, you may make a full recovery after this acute phase. I hope your work will allow you the time to recover.
7. This wonderful blog gave me tons of info and solace, the author Bill Crum even wrote to me personally. He is a GEM: http://livingwithclippers.blogspot.com.
8. Prepare for lots of MRIs. I found that the HeadSpace app was a huge help. They have guided meditations that I do almost every day and when I'm in the MRI, I just replay one of them in my mind. It is a giant help in reducing any kind of anxiety. In fact, the biggest problem now is not falling asleep. I've had 7 MRIs in 5 months.
9. If you're on Prednisone you'll hear that you should avoid sugar and salt. Troublingly, sugar and salt are the main things you crave! It helps me to stay away from them to know that they actually make the symptoms worse. It's still hard, I have lost muscle mass and gained 5 lbs, but I'm fighting hard to eat healthy and keep the weight off. It's hard, but it beats the alternatives. So, do try to avoid sugar and salt, even though the Prednisone is telling you to eat them.
10. CLIPPERS is better than lots of other diseases. My doctor has not 100% ruled out neurosarcoidosis, lymphoma and MS (indeed, for the first week we thought I had an inoperable brain tumor and I spent that time making my end of life arrangements). For now, I'm embracing having CLIPPERS knowing that it could be worse, or take a turn for the worse. It has made me appreciate every day and live with a renewed sense of gratitude and purpose.
I'll contribute more when I can. Do feel free to ask your thousand questions. Good luck!

P.S. Here's a photo of my wife and I - we rode our bikes 10+ miles that day. It was the first time I'd been on my bike since the CLIPPERS onset so it was a triumph. I'm the dorky one on the right.

Greetings! Ame in sunny San Diego, California here. I am putting in some quick notes and then I'll come back and write more after work.
Firstly Graeme, I want to tell you that 5 months after going down this rabbit hole, I am back to working full time, working out (weights, cardio, cycling, hiking) and generally living my normal life. I am 55 and was quite fit before all of this. My symptoms began on Feb. 9th, I was hospitalized twice. The second time I was quite chuffed to wake up the next morning as my symptoms had crept into the autonomic area of the brainstem which controls swallowing, sleep, etc. so my doctor was very concerned. However, I have steadily improved...so take heart!
I've just been on Prednisone so far. Two 3-day pulses of 1000mg/day and then tapering down. I'm on 20mg/day now. My balance was super messed up, my vision was very doubled and it jumped all around, and I had numbness and weakness in various odd spots. All of that resolved slowly over time. The vision took the longest but it steadily got better and now I only have double vision when I get tired or eat too much sugar and/or salt. I have a lot to tell you but I'll have to come back as I'm supposed to be working (lol!). For me it's hard to discern the CLIPPERS symptoms from the Prednisone side effects but I'll try to share some of my observations. Here are 10 quick pieces of advice, I hope you find something helpful in them:
1. Take the Prednisone (or whatever immune suppressant you're on) at the same time every day. Take it early in the day and with food.
2. Rest A LOT. The Pred made me super high and I wanted to do stuff. Staying physically active is good (stretching, walking when safe, just moving about) but don't be an idiot like me and make it worse by not resting enough.
3. Drink TONS of water. It helps with the medication side effects.
4. If you have balance issues, be very careful. I was quite casual about it and I had a bad fall. I've never fallen in my life, I'm usually very sure footed. Be extra careful, even if you feel like you're fine walking. I used a walking stick and it was really helpful (like one of those sticks you take hiking). If you don't have one, see if someone can get you one from an outdoors store. I used mine for a few months.
5. Contrary to info I found online, it did NOT help my double vision to cover one eye. It made it much worse. I just sucked it up and got used to seeing everything double. Believe it or not, your brain will adapt and it gets easier. I also was able to read, text, work on the computer a bit for several months by doing everything up close. Some days I could see up close okay but everything was doubled far away. On the days when it was reversed I had to just rest. Even now I find that my symptoms can change from day to day.
6. About work, I'm self-employed (work on the computer) and I was unable to work for about 3 months (lived on savings). As you're no doubt learning, not much is known about CLIPPERS but from the cases I've seen and my own experience, you may make a full recovery after this acute phase. I hope your work will allow you the time to recover.
7. This wonderful blog gave me tons of info and solace, the author Bill Crum even wrote to me personally. He is a GEM: http://livingwithclippers.blogspot.com.
8. Prepare for lots of MRIs. I found that the HeadSpace app was a huge help. They have guided meditations that I do almost every day and when I'm in the MRI, I just replay one of them in my mind. It is a giant help in reducing any kind of anxiety. In fact, the biggest problem now is not falling asleep. I've had 7 MRIs in 5 months.
9. If you're on Prednisone you'll hear that you should avoid sugar and salt. Troublingly, sugar and salt are the main things you crave! It helps me to stay away from them to know that they actually make the symptoms worse. It's still hard, I have lost muscle mass and gained 5 lbs, but I'm fighting hard to eat healthy and keep the weight off. It's hard, but it beats the alternatives. So, do try to avoid sugar and salt, even though the Prednisone is telling you to eat them.
10. CLIPPERS is better than lots of other diseases. My doctor has not 100% ruled out neurosarcoidosis, lymphoma and MS (indeed, for the first week we thought I had an inoperable brain tumor and I spent that time making my end of life arrangements). For now, I'm embracing having CLIPPERS knowing that it could be worse, or take a turn for the worse. It has made me appreciate every day and live with a renewed sense of gratitude and purpose.
I'll contribute more when I can. Do feel free to ask your thousand questions. Good luck!

P.S. Here's a photo of my wife and I - we rode our bikes 10+ miles that day. It was the first time I'd been on my bike since the CLIPPERS onset so it was a triumph. I'm the dorky one on the right.

Hello, @dustymi11er . I”m so glad you found Mayo Clinic Connect. Clippers is a frightening diagnosis to receive, so I understand you feeling petrified. I was diagnosed 4 1/2 years ago and I had a really difficult start. I was on high-dose steroids but am now tapering off in favor of a drug that suppresses the immune system but without the bad side effects of steroids. My brain has been free of ‘lesions’ for over a year now, but i have to take the drugs forever. 🙁
I do have an article on Rituxan which i received twice. It’s a wonderful drug but it stopped working for me. Then i had 8 cycles of cytoxan (cyclophosphamide, a chemotherapy drug). As soon as it worked, i went onto Mycophenolate mofitil, the immune suppressant. It’s been a long road, but….. I’m getting better
I’m going to ask a few members, who have also said they have Clippers, and see what info they have. @janegm. @balangan111 @movingtomadison @ninamichelle @sweetpeanutbunny and @astanko
How are you doing now?

I was diagnosed with CLIPPERS twelve years ago by Dr. Elizabeth Schubert at Mayo Scottsdale, who had several CLIPPERheads under her wing. Moved to Florida a few years later, and there was zero knowledge of my disease there. I ended up under care by a gp, since there was apparently nobody in Tucson who treated this. I have ataxia, diplopia, double-vision, laughable balance, periods of whispery voice and cramped handwriting. My condition was not treated for what it was diagnosed originally. One neuro said I would get better or worse.
Been on pred for twelve years, what a joy. Trying to diminish dosage from 10 mg. We shall see. My present doctor is scrambling to find someone with knowledge and experience, but, quite frankly, as rare is this disease is, it will be like looking for a needle in a haystack.

Hi Liz. I'm confident that fellow CLIPPERheads (as you said) like @dustymi11er @becsbuddy @astanko @janett18 @ninamichelle @sweetpeanutbunny will join me in welcoming you. Like you, they know how challenging it can be to find a provider who is familiar with a rare condition like CLIPPERS.

Liz, How is your tapering off predisone going?

@dustymi11er, how is your tapering and medication switch going?

Hi Liz. I'm confident that fellow CLIPPERheads (as you said) like @dustymi11er @becsbuddy @astanko @janett18 @ninamichelle @sweetpeanutbunny will join me in welcoming you. Like you, they know how challenging it can be to find a provider who is familiar with a rare condition like CLIPPERS.

Liz, How is your tapering off predisone going?

@dustymi11er, how is your tapering and medication switch going?