Hi, my name is Donna and I posted under the name cherokeedreaming after my husband was diagnosed with Clippers. We went for the July MRI with not good results and no reduction in size of lesions from the largest one of 19.5mm. My husband is about to start on 75mg of Prednisolone with tablets for his stomach as well and is still unable to work due to severe headaches, body aches and fatigue.
My question is does anyone know if Clippers prevents a person from returning to work??
Due to the size of one of the lesions is there a chance he will have a seizure or worse??
How long will it be before we see some results from the steroids as it appears the initial 3 day mega dose infusion didn't do anything.
Sorry to hear about your husband's continuing problems. From my own experience, reading the medical reports and hearing from others through this site, it seems that CLIPPERS is highly variable. It may not be a single condition and/or it may affect different people in different ways.
I was treated relatively quickly and now work normally (office job), however other people have been left with various degrees of impairment.
A CLIPPERS diagnosis means the condition should be "Responsive to Steroids". I had 5-days of 1000mg/day Prednisolone and the doctors saw improvement on a brain scan a few days after the end of that treatment. I noticed some short-term symptom improvement, most noticeably in walking, but it took several weeks on the lower dose oral steroids before I regained anything like normal function.
I'm sure others will have had a different experience so please comment.
I’m sorry your husband is ill. I can only give you information about my condition.
I ‘got sick’ on April 1st of 2013 and was treated with 4 days of IV prednisone. I did get better and could walk with the assistance of a walker. About 15 days later, I relapsed and then continued to get worse (paralysis from chest down). Then another 5 days of IV steroids. This time, they followed up with prednisone pills. With a lot of physical therapy, I was learning to walk again but spent most of my time in a hospital bed or a wheelchair. In June, I went to the Mayo where I was diagnosed w/ CLIPPERS.
It’s been a year and 4 months. I can walk and drive; however, I can’t work. I have a lot of nerve pain in my lower extremities, no stamina and difficulty focusing my eyes later in the day.
I don’t know if any of my information helps, but please feel free to contact me.
I hope your husband starts feeling better, Terry
On Jul 22, 2014, at 3:32 AM, BillCrum [via CLIPPERS] <[hidden email]> wrote:
Doesn't look like it to me
Sent from my iPad
On Jul 22, 2014, at 6:23 PM, "Terry [via CLIPPERS]" <[hidden email]> wrote:
In reply to this post by BillCrum
Hi Bill, thank you and everyone for replying to my post. It was very helpful. My husband has started on his 75mg prednesilone along with stomach tablets so we are keeping our fingers crossed as the last 3 day infusion didn't work or do anything except make him really ill.
I feel that I am in a minefield here with so little information available apart from your good work.
Is it rare that one of his lesions is 19.5mm?? our neurologist tells us that it is not like a tumour that grows and takes up space in the brain but rather it grows by killing off surrounding healthy brain as it gets larger, any comments on this??
I am of native American descent Cherokee/Seminole/Sioux and all I can believe is that grandfather must have a natural herb/plant somewhere that can help everyone who has this condition
Blessings to you all
Seeks her dreams (proudly native American nations)
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