CLIPPERS Diagnosis

[Dennis]

Hello guys,

excuse my English, im a 29 old male from Germany.

Last november my Story beguns. The right side of my Face started to become numb. I also had very strong headaches and get to the Doctor. The Doctor just gave me Novalgin Tablets and said i should relax until the weekend. I Started to become double Vision and some Problems to walk. After the weekend it wont be better, so Me and my Girlfriend decided to visit a Hospital. After that i was not able to walk without a wheelchair and my double vision still exist.
They started a MRI and have seen, that i have many lesions in my Brainsteem and my Pons. They brought me to another Hospital. They began to give me some Antibotica and Cortison to stop my Symptons. I Had many investigations. Also they took nervous water. They said it isnt MS but they dont know what it is. They started with the Diagnosis ADEM. After some days the decided to make a Brain Biospy because they think it could be a Tumor.

After a few Days came the result. No Tumor. I Was really happy.
I Begun the rehabilitation after 2 months in the Hospital. Ive been there for 4 Weeks.

Now im at Home since Feburary 2018 and still have some Symptoms:

They numbness in my Face isnt gone away....Its still there arround the Mouth. Thats the reason why i have still Speech issues. Not much but a bit.

I still have  Problems with the balance and with my motor skills.

Im at the Moment at 15mg Methotrexat per week and now at 10mg Prednisolon. I started with 70mg at the Beginning of the Year.

I have big mood swings and i am exhausted all the Time.

Will these Symptoms disappear any Time? Nobody  can Tell me something because nobody has experience with this Rare Disease. I Dont know what i should do.

Excuse my Bad English and i hope all of you can understand what i have written.

Greets Dennis.

[Will]

Dennis,
Symptoms and prognosis are variable with CLIPPERS. I can only tell you my experience and yours will surely vary. I had some improvement or maybe you might say I adapted to my symptoms in the first few years. I'm in year 7. I've had two relapses when lowering my prednisone. I'm currently at 14 mg/day. My double vision improved by I now have difficulty focusing. My balance seems to be deteriorating and my talking is "gone to shit". All that being said I'm grateful to have friends and my wife as partners. Life is what you make of it. This has become my new normal. I do what I can and I'm often surprised.

I study Stoicism and this philosophy helps.

Good luck.

Will

[Dennis]

Ill visit the hospital this tuesday for another 1000mg steroid therapy. The last scan showed that the old lessions are back and a lil bit stronger as the last one.
Symptoms are still there.

I will report when im back

[Dennis]

And  again this wednesday into zur hospital. On my last visit i got nothing. Now they will try another Puls treathment with 1000mg corticoidsteroids and something Else than mtx. My last scam showed my old  lessions are still there and still Active. Symptome are still there. Balance problems and nystagmus. I hate my Life at the moment. All i do is Laying in bed and Couch. I hope my symptoms dissappear when i Go Home. Ill report when im back. Greets

[Dennis]

Update:
Im on day  3 of 5 IV Pulse threatment. My balance/Walking has started yesterday to improve a Bit..i hope it continues improving !

If the cortison Pulse threatment is Not succesful enough,  they wann to replace it with something Else. I will report when the Pulse threatment  Ends.

If there is someone from Germany or wann join our  Whatsapp Group Contact me and send me your number. We are 3 now.

Greetz Dennis.

[Dennis]

Hey Guys,

excuse my Delay.. Im back from Hospital since last week Wedneyday.

On Day 3 of the IV Corticoid Therapy i realized my Walking  was much better. I still have some balance Issues but its much better than before.

They detected in another MRI i have new lessions in the spinal cord. Thats the reason for me symptoms. They increased my Medication from 20mg MTX to 25 mg MTX per week.

They also took nervous water again.... I hate it so much.

They also detected a spasticity in my Legs and give me Baclofen against it ( i dont know exactly how much mg)

I cant understand that nobody has seen it before. i visited so much doctors in the past and told them about my problems in the Legs but nobody has seen it.... Unbeliveable in my Opinion.

I will visit the Hospital next Year in January again. And then they maybe wanna splash Corticoidsteroids directly in my Spinal Cord...

We will See...... I will report again!

Best greets from Germany

[Dennis]

Hello,
I was in hospital again and received 500mg urbason and then 2g urbason. I left hospital yesterday. I woke up today in the morning and was Not able to walk. Nystagmus started again heavy.now they want to Start plasmapharese tommorow again and then start with rituximab. My Life is a nightmare..... can anybody help me? I dont know what to do anymore!

[Meike]

Hi Dennis,
I'm stable on 15mg MTX and 5mg Prednisolone for more than one year now.
Although I'm not a doctor, some publications seem to indicate that Rituximab or Rituximab combined with prednisolone could be a working therapy.
If you are based in Germany, I'd recommend to visit the Uniklinik in Heidelberg as they seem to have some experience with CLIPPERS and have other patients there too.
Best regards

[Dennis]

Hi Meike.
I was on 15mg mtx Top then to 20mg and then to 25 mg. I have so much fear. Again plasmapharese.... its horrible. Im at the moment in Karlsruhe, städtisches Klinikum. Are you from Germany Too?