Newly Diagnosed

[Jenn]

I'm 44 female and live in Seattle WA.  I was diagnosed last week with CLIPPERS by a neurologict at Virginia Mason.  I'm trying to get a 2nd opinon from the Mayo Clinic.  Thanks to everyone who has contributed so far to this site.

So far I'm living between frustration of missing work/life the last month and scared for the future. I start 5 days of IV treatment Monday then 6 weeks oral.

[BillCrum]

I'm sorry to hear about your diagnosis but glad you found us so quickly. I spent 2 months with worsening symptoms wondering what was happening and another month in hospital while they tried to figure out what was going on so I sympathize. And this was a relatively quick diagnosis!

The IV treatment seems to act quite quickly in many people; for me it was a bit slower and improvement was gradual. Hopefully your treatment will enable you to get on with your life.  Good luck with it.

[Will]

Jenn, I too am sorry to hear about your troubles. Like Bill, I too languished in a undiagnosed state of anxiety for a few months before diagnosis. My doctors were so worried that I consented to a brain biopsy. Not fun. I too was 'scared for the future', so much so I stopped even brushing my teeth as I figured I wouldn't last long enough to be bothered. Well it turns out that you never know. I am still here and have had to restart my dental care. That was back in 2011. Sure I have changed. Cognitively I'm still here, neurologically a little off. Life is still wonderful and mysterious. There is a wide range of potential outcomes. Here to hope that yours is on the easy end.

I'm a 58 male and live in Moscow, ID. You are almost a neighbor especially in terms of CLIPPERS patients.

Keep us posted.

[Alice]

Jenn good luck, one year ago I was lucky enough to have a neurologist put me on a plane to the Mayo clinic where I had a brain biopsy. It still took three months for a diagnosis but by elimination it was finally diagnosed as CLIPPERS, and i responded positively to 5 days of Igrm of steroids daily. Then 1 grm weekly for a month then 40mg daily for 8 months with tapering to follow.  We r now at the point of deciding on the treatment going forward. I will not tell you it has been easy, the disease forced me to retire from an 18 year career that I loved, I still have bad headaches daily, I have described myself as "clumsy" I know take medications for high blood pressure, water retention, sleeplessness, anxiety, and the disease took away all hearing in my right ear. I also developed osteopenia and deal w bone issues. I volunteered for a study at the mayo clinic on autoimmune diseases and there effects on the central nervous system so I hope the future will bring more answers then questions. If you r able to visit a mayo clinic I strongly recommend it as they probably have more information on this disease then anyone. Good luck.G