Please could you read my story and tell me what you think. I am a 38 year old female.
I awoke one morning in August of this year with numb legs. I arranged an appointment with a private consultant neurologist as my GP said that going through the NHS route would take weeks. My initial appt was private and he then changed me to NHS as I don’t have insurance and not much money either! At the inital appointment he checked my eyesight, gait etc and said that they all appear fine and that my issues are sensory. He asked about my bladder control etc and that is fine. I have always had a weakish kind of bladder but never any urgency etc.
I had an MRI scan 6 weeks later and the results showed a lesion on my brain and spinal cord and he said that the lesion on my spinal cord was probably the one causing the numb feeling in my legs. During my appointment, as he was showing me the scan pictures I was actually reading the report that the radiologist had written that was underneath the pictures and I saw the words ‘consistent with multiple sclerosis’. He said that this is a Clinically Isolated Episode of Demylenation and that he would run blood tests. I went away initially feeling good as it wasn’t a tumour or anything but then the paranoia set it.
I called him a few days later as I was so anxious and asked him to be straight with me as I couldn’t stop seeing the words ‘consistent with MS’ in my mind. I asked, "do you think that this will turn into a diagnosis of MS?’ and he said that he feels I am low risk and that my chances of it are probably around 15-20%. He said that the radiographers comments about being consistent with MS are to be taken purely in a clinical context and that other factors have to be included. I felt a little better after the phone call.
I received a copy of my blood tests, B12 was normal, U&E’s (?) were normal, auto antibodies were negative along with other normal stuff but my vitamin D is low at 15.9 so I have been prescribed 20,000 IU’s twice a week. I have to say that since taking the vit D supplements I haven’t felt as well as I did.
He still thinks I am low risk but everything I have read on the internet is scaring me, that CIS with lesions is high risk, that low vit D means MS. I have also read that having an issue in both legs means PPMS. I have had no weakness in my legs and they are nearly better, when I am scared or anxious I feel like there is an electrical current running through my body and this scares me but when I am not scared I don’t feel that much at all.
I wasn’t supposed to see my neurologist until March but he is now seeing me in January so that I can address my concerns but I wanted to know what you people thought. I know that there are no guarantees with regards MS but I would appreciate your honest opinions. I have to say that I really like my neurologist and he always tries to see/talk to me when needed.
I know this is long winded but I am scared to say the least, my fear of this is taking over my thoughts and I would really like to het a handle on it. I appreciate any responses.