CLIPPERS: Looking to connect with others

Good job finding the forum Jamie. Whew, what a scary ride you’ve been on. I am maybe an unusual case of complete recovery. I was beset very quickly (came on in 3 days) in Feb. 2022. We flailed about with a Lyme disease misdiagnosis but then I went on 1,000mg pulses of Prednisone. I tapered down over many months with the last being Oct of 2022. I’m on infusions of Ruxience now 1 every 6 months. My last MRI a month ago was completely clear. At the height of it I had complete double vision, ataxia and weird numbness in various spots. Couldn’t drive, had a bad fall (broke a small side part of a vertebrae), and was having weird sleep/wake issues. Now all of that is gone. I can do everything I did before. I feel very lucky. I try to exercise and eat right but the Pred gave me a real craving for sugar, which I’m fighting (lol) so I can’t claim to eat all that great. I honestly think it’s just the Pred that saved me. I also just kept moving. When I couldn’t walk I got on my cheapie little exercise bike. I had a lot of fatigue but I made myself do a few minutes at a time. Anything to keep my body moving really seemed to help. Please continue to share your story and ups and downs. Because of the involvement of cranial nerves, symptoms come and go in the weirdest ways. Sometimes a terrifying new symptom would pop up (trouble swallowing for example) but then go away. As I understand it, the lesions/inflammation demylenate the nerve sheaths, thereby cutting into the electrical activity. As the inflammation comes and goes, different nerves are affected. Plus, the brain can reroute signals over time to go around damaged areas. So, I just pictured my brain with little construction crews working on damaged areas to re-establish the pathways. Maybe that can provide some comfort to you too. Again, totally clear MRI a month ago - woo hoo!!

Hello all!! I hope everyone is feeling great!! I was diagnosed with Clippers this past April. Now my neurologist and the Mayo Clinic nueurologist want to put me on Cell Cept!! I’m not going to lie, very excited to start the wean off of steroids but Cell Cept has some nasty side effects. I really don’t want to be on a immunosuppressant. I know people have been on Cell Cept with no steroids, but how do you feel? Is it worth it? Or stay on a low dose steroid? I’m 50 with a 6 year old. I’m an active dad and want to stay that way. Any input or advice would be greatly appreciated. Much love to you all and keep fighting!!!

My trip to UVA was a mixed bag of emotions. The are redoing my MRI in a couple of weeks after my open lung operations. The doctors at UVA want to do a lot of testing which is good. At least they have seen clippers and actually have about 10 patients with it. I feel very blessed to have gotten in so quick.

Hello Everyone....and Welcome Jamie:
I made my first post on June 26. Then, it looks like I lost interest. But No, I think I just don't have my notification settings set correctly. I am struggling more with cognitive skills the last few days, especially anything new (this forum/any social media is new to me). Just getting to the Clippers: Wanting to Connect thread was a struggle today. So I won’t be fixing my notifications right now, but will check in more often.

UPDATE on my JOURNEY with CLIPPERS:
- I am now on Week #12 of Prednisone (Started @ 60mg, now @ 40 mg).
- I am also on Cellcept...Week #6 (Neurologist added this during my 6th week on Prednisone due to slight increase in symptoms, and NO symptom relief).
- I had an earlier-than-planned visit with my Neurologist on July 8th (instead of August) due to continued increase of symptoms. Outcome of appointment.....
- Good news, my recent MRI and bloodwork do not show anything worse than before, just not any improvement.
- I do still have inflammation in my neck and collar-bone area (earlier ER blew it off as edema/weight gain from Prednisone). My neurologist thinks it is not symmetrical (more puffy on one side). She ordered a CT. I will have that this coming Tuesday, 7/23.
- No changes to meds. Next change will be at 30 day mark, to drop Prednisone down another 10mg. Looking forward to more relief from side-effects.
- Best new….No visual difficulties (diplopia/oscillopsia) since May 28th - Get to drive again!!! Yay!

DAILY SYMPTOMS:
- Pressure in my head/neck (ears feel very plugged, but aren’t - No fluid and ears continue to “look” great. When standing after sitting for 20+ minutes, this feeling increases quite a bit in intensity, then drops back to it’s usual pressure/humming within a minute or so. It hits pretty hard though.
- Constant Burning in my skull
- Pain in my head on days when pressure in head is higher (it varies)
- Lots of low, humming/buzzing (Tinnitus?). Makes it hard to hear.
- Still having balance issues, though NOT dizzy.
- Increase in bladder control difficulties (a couple actual accidents) UGH !! 🙁
- Swallowing difficulties and biting my cheek/tongue when eating.a bit better, or I am just more mindful when eating, not sure?

LAST FEW DAYS …..yucky, but no trip to emergency…..not drinking wine, so I need to WHINE a bit:
Greatly increased pressure (I think from Brain Inflammation, not just head and neck, but into chest….I can still breathe and BP is good. No Temp. No extreme pain. I feel like my arms and legs are made of led and my brain is very foggy. And, today, first time in my life, I have dark circles and puffiness under my eyes. My CT is Tuesday, so I will wait for that, unless any of these things get worse. My husband is keeping an eye on me. — If you sense an aversion to ER, it is because they tend to just want to treat me for headache and send me home. They don’t know CLIPPERS and they don’t get it. I need to get better at explaining what is happening to me.
TRYING MY BEST TO STAY POSITIVE - not feeling like a patient-patient.
Anyone have similar symptoms/experiences?

@mikedmc27 I’ve been on cell cept for about 4-5 years. No problems, except for a very serious case of diarrhea. Cheanged to another form of CC - Myfortic- with no problems. you do have to set a 12-hr dose schecule. that’s been hard because even though my alarm wakes me up, i seem to not pay attention. CC is a steroid sparing drug, not a steroid. I feel really good on CC but might be coming off it as rituxan has worked well so far. A 6-yr old will be harder than CC!

@kristyinoregon That’s quite a journey!! I’m wondering, though, if a doctor or nurse practioner has examined your ears. i had ear problems just like you describe and a doctor found a large amount of wax in my ears. it happened twice, but never before Clippers. the doctor said that ear blockages are common in those with autoimmune diseases. I’m very careful with my ears now: no Q-tips, no nothing! and I let water in my ears while showering to keep the wax coming out. Buzzing and humming in your ears is tinnitus, but it might also be related to your stuffed up ears.
You are still very early in the clippers journey and all the “extras” should fade away with time. It just takes time and perseverance! You have a very good attitude which will help immensely!

Becky,
Thanks for your question. It’s a good one. Yes, we’ve checked all that out. My ears are textbook in terms of structure conductive functioning. We even have imaging of the cochlea. No fluid in the middle or inner ear, the drum is intact and functional, very healthy. No wax buildup, or obstructions of any kind. I had been hoping it was something that could be fixed. Not sure if it’s damage in the PONS, or if it has to do with the brain inflammation that they see on the MRI.
On another note, I have read through most of the postings and do not see anyone talking about pressure in their head or burning in their skull . I wonder about that. I need to read through them again and find the, when I have good cognition, less fog. And, I have only seen a few posts that refer to tinnitus. I will probably reach out to them, need to read back through to find them.
Oh, and thank for the hug and encouragement.
Needed that. 😊

I have MS, as well as medical sensitivities snd allergies. I have been good with copaxone as well as strict vegan keto diet snd lots of supplements including gaba for muscle spasms. NOT gabapentin, just plain old gaba ftom the health food store. Do research please before attempting any of these drastic measures. It's possible to do a "cheater keto" of eating healthy ie Mediterranean style diet, and adding mct oil as tolerated/recommended. Mct oil is already fractionated to a form that can only be used as ketones. I found Dr gundry's research on this fascinating. However, my body no longer tolerates most kinds of starch and sugar so I carefully trod along.
The main reason I'm replying is because I have major issues with steroids. I have found HMB to be wildly good, couldn't believe it actually. It's a body builder supplement that helps the body hold onto muscle etc instead of breaking it found constantly. Please research, but didn't react with my other stuff and that says a lot. They recommend vitamin d with it, as always check your mineral levels snd calcium intake vs magnesium intake as part of your vitamin d regimen, as too much vitamin d is rare cholecalciferol deals eith calcium deposits. Again, lots of medical journals you can read about the dose.
Hmb was shown to help elderly snd immuno compromised people achieve significant results - this is new research.
Hopefully you find what works for you, took the time to reply because you need to stay well for your kids, they need you.
Certain diets, like the one I described, have been shown to help the body remylenate by feeding the dendrites, but the results can be years so please don't give up.
The keto diet took my brain fog away pretty significantly. I have a meat allergy, so I blend my liquid diet of sunflower seeds, almonds, pea protein, coconut etc with vitamins, add mct to everything and voila. It's some inspiration in case someone on here is desperate, hopefully the meds work and you won't be desperate.

Sue,

I had my Pet-CT and two MRIs at NYU Langone on Monday. The results are in my hands before any word from the doctor, and they look quite good, with no abnormalities found and little difference from earlier procedure results. So this appears good from the perspective of confirming I am in a stable period and condition. At the same time, it keeps what's causing my symptoms unknown. I am of course looking forward to what my doctor has to say and will share this with you, as well as others who may find it helpful.

Looked at your profile, Sue, for the first time and see that we are similarly happily married, grandchildren-ed and each have a cat! And each into emphasizing positivism. I am reluctant to fill out my own profile, having spent many years as a privacy consultant, although I do wonder, at my age, and in this context, if it makes any difference!

Anyhow, thinking of you and hoping the best for you.

Don

@donnyboy
Hi Don,
Thank you for sharing your recent tests at NYU Langone. I am happy that you are stable. It is always a good feeling when you receive that report. However, still having no answers is unsettling.
It is so nice to have similarities and being able to share. I too was reluctant to fill out my profile, but I decided to.

Again, so glad your tests results were good!
Thinking of you and hoping you have a good day!
Sue