Busy day yesterday seeing my Neuro Consultant, we are trying desperately to find a answer and some form of relief for the nerve pain I am suffering in my left leg. To be fair with no feeling down my right side I can’t say if the pain is in both legs. Plus the electric shocks in my spine seem to have stepped up a bit.
Anyway I have decided to take the step and ask to go on Lemtrada a drug which effectively acts like chemotherapy except I keep my hair (don’t have much anyway). Apparently I have to be infused for 5 days in the first year and for 3 days in the second years which destroys my immune system, in turn apparently making you feel really unwell for a while (but I can live with that). For a month afterwards I have to be careful as I effectively will have no immune system whilst my white blood cells regenerate hopefully with the MS disease less active on them 🤞🤞 I have read so much of this drug in leaflets and now the internet, I know the side effects can be harsh and long term risky but Tony Johnstone European Tour And Presidents Cup Assistant has been so kind in giving up his time to speak to me about his experiences on the drug. In fact he came back and won on the seniors tour after the treatment.
The only negative is it doesn’t repair the damage already completed it just hopefully eases any further attacks. So I have to get used to no feeling down right side and maybe some pain in the left foot along with no sight in right eye. Furthermore it doesn’t stop my my symptoms (these are different to MS attacks) Symptoms like a fatigue and spasms and will stay forever but can easily be managed. (See my other blog about my symptoms)
To be honest I am excited and looking forward to the drug. I just hope the panel agree that I can go ahead with the drug.
Also I had a great chat and new ideas / methods about my Functional Neurological Disorder FND and how we can work on getting it more under control with my psychologist and Physiotherapist as this again may be an underlying factor to the nerve pain I am suffering down my leg.
The final part of my triangle will be the my Non Epileptic Attack Disorder but if we can calm down the first 2 elements then hopefully this will settle down the NEA’s
I think a Yoga or Pilates class will be seeing me soon.
All in all I am feeling positive now. Just awaiting MRI scan and some other tests and then got to get rid of this pain or at least make it bearable so I can get back home 🏠
Roger over and out