Of those of you who have a definite, not probable, diagnosis of CLIPPERS, how many have stippling of the pons on MRI?
I read a research paper on Medscape about CLIPPERS that said the hallmark of CLIPPERS was stippling of the pons. The author had his e-mail address at the end of the article. I sent him an e-mail, briefly describing my symptoms, and ask him if he had ever seen a case of CLIPPERS that did not have stippling of the pons on MRI. He said no.
The reason I ask is I don't have stippling of my pons, just one big lesion. I do have elongated c-spine lesions as seen on a website example of CLIPPERS but that person also had stippling of their pons.
My neurologist thinks what I have was first MS and now CLIPPERS. A second opinion from another neurologist isn't ready to call my disease CLIPPERS, but most likely some type of auto-immune disease. I was scheduled for a biopsy of the 1.7 cm lesion in my brainstem but the neuro-surgeon canceled the day before surgery as I would definitely loose some autonomic function. My neurosurgeon, and the radiation-onchologist associated with him wasn't ready to call my disease CLIPPERS. They were just glad, in hindsight, that the probability of a glioma was decreased.
My initial MRI's did not show "stippling of the pons". Instead they showed stippling, with some larger lesions, of the cerebellum. Like you my neurologist and neurosurgeon thought initially that this might be and probably as a glioma. After biopsy reviewed by Dr. Peter Burger and a second opinion of the neurological workup by Dr. Arun Venkatesan both at Johns Hopkins, Dr Arun Venkatesan diagnosed me with CLIPPERS. Apparently he has other CLIPPERS patients and some experience treating CLIPPERS.
With all this, I'm as certain as I can be the my lesions and disease process is CLIPPERS. Certainty is a funny thing though.
I'm in the middle of a tapering treatment. I've been tapering prednisone, 10mg a month, and now am at 40mg per day. I don't know what is worst the treatment or the disease. I hope that many or some of the issues I'm experiencing will go away or at least diminish as I continue to taper. I don't expect that the balance and speaking problems will go away but the sleep issues, feet and hand numbness and the extreme tiredness are probably (hopefully) associated with the prednisone.
My initial neurologist was hesitant to label my condition CLIPPERS and searched for any other explanation for my condition. His searching was expensive and exhaustive. Cancer workup, 2 spinals, blood work up the wazzu, CT scans (head to hips) twice. He still questioned the biopsy. While he searched, he had me on a pulsed treatment of solumedrol 2500mg IV over 4 days once a month. With this treatment the lesions diminished. So what I have is "Responsive to Steriods".
He has since retired. My second neurologist is 70 and while probably should retire, at least he acknowledges that he doesn't know about CLIPPERS, he is willing to defer to the advise of others.