← Return to pachymeningitis

cgrammie2 (@cgrammie2)


Brain & Nervous System | Last Active: Jun 20 12:01pm | Replies (85)

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Thanks for the reply. Her reoccurring symptoms are pain throughout her spine and body. Tingling in the feet and hands. Her RA number continues to sky rocket. She is now having nose bleeds. She gets bruises all over her body.
Her vision continues to worsen and her liver is in stage 1 failure. They now want to biopsy the tumor in her brain. She has constant headaches.
Her legs gave out on her the other day and she fell down the stairs.
She is in chronic pain always.

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Replies to "Hello Thanks for the reply. Her reoccurring symptoms are pain throughout her spine and body. Tingling..."

I’m so sorry to hear how much pain your daughter is experiencing. I only thing that worked for me was Rituximab Infusions. It last in for about 6-8 months. I am even able to wait about 10-12 months for the next set of infusions. Please let me know if you need more information. Sending your daughter and you healing thoughts and prayers.

Is she on steroids? I was on dexamethasone for 10 months. After my children insisted the docs at Baptist take me off them, I began to improve. I could not walk, my feet and legs were sooo swollen, I still have no memory of several months, I had to wear a diaper, I could not bathe myself or brush my teeth or hair. My hair thinned and came out..My hearing has gone south, but my vision has improved. My gait is not what it use to be, but most of the time I walk well. I no longer fall. I always fell backward..always. I can no longer ride a bicycle or go for long walks. I still forget things and have anger issues. I also bruised easily..not as much now. However, I have never had a bad headache. Sometimes, now my head feels as though there is pressure on the left side and I become very dizzy. However, I find if I lie down and put my feet up, it goes away in about 20-30 minutes. My last MRI in July showed vast improvement…the steroids were far more damaging to me than Pachy. I will never take them again. Keep us updated on your daughter…Prayers helped me and I will pray for your family.

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