Has anyone with similar circumstances tried Fampridine (Fampyra)?
Hi everyone,
I would really appreciate hearing from anyone in this group who has experience with Fampridine 10 mg, particularly those who have obtained it privately.
I have been living with MS for approximately 12 and a half years and currently have an EDSS score of 6.5. Interestingly, although my MRI scans show no new lesions or active inflammation, and my doctors consider my condition to be stable, my walking ability has deteriorated significantly over the past three years. This contrast between the apparent stability of my MS on MRI scans and the noticeable decline in my walking ability is one of the main reasons I am interested in trying Fampridine to see whether it could help improve my mobility.
I experience significant mobility difficulties, particularly muscle stiffness and spasticity. Nevertheless, I am still able to do approximately three hours of physical exercise per day, divided into two sessions. Despite remaining physically active, I continue to struggle with walking and would like to explore whether Fampridine could potentially improve my walking ability and overall mobility.
My blood test results are good, and my kidney function is normal. I have no history of epilepsy or seizures. I have obtained Fampridine 10 mg from Turkey and would like to find out whether it might be effective for me.
I have discussed this with my treating hospital, the National Hospital for Neurology and Neurosurgery at Queen Square in London. However, at present, they have not been able to provide a clear answer regarding my request, as they have not yet established a treatment pathway or protocol for this situation.
I would therefore be very interested to hear from anyone who has been in similar circumstances and has obtained Fampridine privately.
My main questions are:
- Has anyone with an EDSS score of around 6.5, normal kidney function and stable MRI scans tried Fampridine?
- Did you notice any improvement in walking, balance, muscle stiffness or overall mobility?
- Did you experience any side effects or complications?
- Did you undergo any specific medical assessments before starting treatment?
- Has anyone experienced significant deterioration in walking despite stable MRI scans? If so, did Fampridine make a noticeable difference?
Thank you very much for taking the time to read my post. I would genuinely appreciate any experiences, insights or advice you may be able to share.