I was told in 2001, aged 41 by a Neurologist that I had MS. I had experienced what presented as a relapse the previous year which only lasted 4-5 days.This was after he’d carried out a detailed physical examination, even though an MRI of the brain and spinal cord (arranged by a previous consultant who had subsequently retired) was reported as “essentially normal”. The consultant told me the diagnosis quite bluntly and said that I needed to have a Lumbar Puncture and Visual Evoked Responses done to gather the “supporting evidence” needed to access Beta-Interferon which was just coming into use back then.
The VER results were “normal” and the LP showed “oligoclonal bands” in the Cerebro-Spinal fluid but these were ALSO present in the blood test taken at the same time (serum) which I’ve since been told is “not usually” seen in MS.
I have been very well ever since with a slight weakness in the left leg associated with some numbness in the outer aspect and frequent short bursts of pins and needles which resolve after a few minutes. Fatigue is a problem along with chronic constipation and some urinary urgency and hesitancy when starting to urinate. I have had periods of up to 10 days when the weakness in the leg seemed worse but resolved after that relative flare up. My walking stamina has deteriorated over the last 5 years and both legs feel heavy after walking short distances. I also experience sensory tingling in the face and hands.
In 2010 I saw a new Consultant after the one who diagnosed me also retired! The “new” consultant expressed some doubt about the diagnosis and arranged some blood tests to exclude things like Vasculitis which he said could “mimic” MS. These all came back negative.
In 2012 He saw me for review and examined me. He stated that he thought the diagnosis of MS was “pretty solid” as he put it and wanted an up to date MRI. 6 weeks after the MRI I received a letter from him saying “apart from a small scar in the Pons area of the mid-brain, there is no evidence of Multiple Sclerosis.”
I felt extremely confused as I’d lived my life for the previous 11 years believing I had been given the correct diagnosis and that I had accepted I had MS. I contacted my MS nurse and she arranged for my review with the Consultant to be brought forward to discuss this.
I asked him whether I had MS or not but he didn’t answer the question. At no point did he say that there were a small percentage of people whose MRI’s showed nothing (which I have read CAN be true) and did admit that I had one lesion.
I realise these radiological findings do not fit the McDonald criteria for diagnosing MS.
In mid April 2015 I started with increasing walking difficulties and problems with spacial awareness. My balance became unsteady and my vision blurred. I continued to work but was finding overwhelming fatigue meant staying awake more difficult and after 4 weeks I rang the MS Nurses for advice. By this time my walking was almost impossible unaided and an appointment was made for me to see a consultant within 5 days. By the day of the appointment my walking was extremely jerky to the point where people were staring at me on my way to the clinic and I needed to hold on to my partner to walk at all.
A different consultant examined me (mine was on holiday) and the nurses told me that he’d found my reflexes to be abnormal on examination. He gave me 5 days of high dose steroids and talked about “treating a relapse”. He then said I needed a “more detailed” MRI of just my brain this time. I didn’t think to ask what “more detailed” meant.
2 weeks later I had the MRI (no contrast was used by the way). I asked at the scanning department if I was to have contrast for the MRI as the consultant had mentioned a “more detailed” MRI and they went to check on the referral card. The other person in the room told me they didn’t do contrast scans at weekends and this was a Saturday! When the Radiographer came back he just said they’d do this scan and if the consultant wanted anything different he’d let them know. I asked directly if the referral had specified a contrast dye being used. He hesitated and then said “no”.
6 weeks later I received a letter saying “I am pleased to report that the more detailed scan of your brain did not show any evidence of a recent relapse”. That seemed to say I had NOT had a relapse!!!
I am now waiting for a review appointment. After 8 weeks of disabling symptoms I have gradually returned to normal and I’m going back to work next week. I was told at the acute clinic that it would be “very unusual” if this MRI didn’t show anything and warned that it this was the case then my regular Consultant may “want to re-think things”.
It seems to me that my diagnosis is becoming less and less believed and that has left me feeling extremely distressed. I almost feel that I myself am not being believed despite the abnormal findings every time I am examined. Once the scans come back pretty much clear then they seem to re-trace their statements and forget what they saw and said before the results came back.
Does anyone else have only one lesion after 15 years and have had what was 99.9% typical of an MS relapse that lasted for 2 months?
I am now fully recovered and obviously extremely thankful but I NEED a diagnosis to get on with my life and to feel believed.Is there anyone else out there with similar findings whose had a classic relapse?
Thanks for listening.