After having symptoms for a year, I’ve been diagnosed with clinically isolated syndrome (CIS). Before the diagnosis, I was given misguided physio by the local NHS physio group. My symptoms got progressively worse over a period of seven months. I started to get needle-like pain in my legs when sitting. This still happens. My right leg and arm feel weak. I’ve got numbness. Eventually, I was allowed to have an MRI.
The MRI showed a lesion in my spine in my neck (C5-C5) and wear and tear in my lumbar region. I saw an NHS neurologist who told me in a forthright but insensitive way that I have CIS. He dismissed my leg pain as a trapped nerve in the lumbar region. (Not true, said a neurosurgeon whom I later saw.) At the end, the neurologist basically said, ‘You’ll get an MRI in a year. Bye!’
I appear to be stuck with the symptoms. My life has been disrupted because I can’t sit for very long without getting pain. A couple of months ago my symptoms seemed to improve and I was thrilled, but now they are back full strength.
I’m struggling to deal with the pain and the symptoms, but also, by the dismissal by the medical establishment. When I asked about steroids, the neurologist said that he’d seen someone develop psychosis from them and, anyway, he said, they’re only good at the very beginning stage.
I’ve got an appointment with NHS neurology in London in a few weeks—a last roll of the dice. This time, I will hand a print-out of my questions to the clinician at the start of the appointment. They are: why haven’t I recovered from my CIS? Why can’t I be monitored more frequently? Isn’t there any treatment?
Hi Jean
It sounds a weird diagnosis. How can something be a clinically-isolated episode yet be continuous? OK, we’re not Doctors around here, but it flies in the face of what we’ve been led to believe about CIS, RR pr progressive types of MS.
I would offer two suggestions:
Get a second opinion. You mention your Neurologist, but is he/she a generalist or MS Specialist?
Go and see a chiropractor about your lower back. I have chronic lower back pain separate from my MS and which, to an extent, has masked the extent of my MS-related pain/ stiffness/ mobility but as MS sets in, the muscles which support the spine in the lumbar area decondition along with the rest of your muscles. My chiropractor has done a tremendous job freeing up muscles that have been locked up for years. It has been painful as long-dormant muscles are being used again, but I’d rather have my mobility and treat the pain. It might work for you too…
I got a second opinion yesterday from a generalist NHS neurologist at the UCL Hospitals. He said it’s all in my head and will refer me to a neuropsychiatrist.
I had been seeing a chiropractor for a while because I initially thought I had sciatica. There was no change. However, I wouldn’t rule out seeing him again. Prior to all of this, I had been keeping fit with pilates and strengthening exercises.
I’m going to take a break from doctors for a while and just get on with my life. I’m tired of fixating on this area of my health. No one’s offering me any treatment, so I am going to move on.
I think that stepping away from the vehicle is a very good idea. Arguing with doctors is weary work. If something new and neurological happens (and I hope it doesn’t) that will be the time to have another go. Dr Time is the best diagnostician, as they say.
