I’m in need a bit of support from people who can understand how I’m feeling. My neurologist has basically said he’s 99% confident I have MS and it’s a little overwhelming.
In May 2011 I had paralysis in my legs which ascended my body to my waist. At the time I didn’t receive awfully good treatment and did not have the tests I should have done while in hospital. I was diagnosed with a Guillain-Barre syndrome (demyelination of the peripheral nervous system) and I made a good recovery over a 6-8 month period. I was able to walk without a stick by October which was good going and given GBS doesn’t really relapse, I was given a clean bill of health. I then moved house mid June 2012 to a new area, and two days after the move I developed severe double vision. I went to Derby hospital and saw the ophthamlogist and was referred to a neurologist. Following the history taking, electromyography and a brain and spinal MRI, the neurologist has said he’s virtually positive it’s MS. He ordered a lumbar puncture which was somewhat delayed and I had it last Friday. Unfortunately it was not successful and I went back for an x-ray guided LP today.
My neurologist told me this last Monday that if I had not had two relapses in 13 months he wouldn’t have pursued the LP - he said it isn’t always helpful to be officially diagnosed for lots of reasons (mortgages/insurances/DVLA etc) and that if the relapses are few and far between he would diagnose when the time is right. As it stands I have had the LP as he wants to diagnose me so I can be put on beta interferons to reduce the relapses.
I have so many thoughts and questions going round in my head, from whether I am going to end up unable to speak or swallow, what drugs will I end up on and how will they affect my life, feelings of guilt towards my husband that I’m ill, right through to whether or not I should have children. I am 30, I’ve been married for 3 years and with my husband for 9 years and we were planning on starting a family this last year. I just feel everything is topsy turvey. I want to be strong for my family and myself and I’m determined to get myself as fit and healthy so I can handle relapses as best I can, but it’s all a bit overwhelming.
Has anyone experienced something similar? Also any insight on the beta interferons would be greatly appreciated
Sorry for the long post and thanks for listening - even writing this was cathartic.
PS. It’s not all doom and gloom - tough times can bring out the best in people. My family and work have been fantastic and I’ve been enjoying walking my little puppy in the Peak District. Life can still be good.