This is my first time posting here, though I have enjoyed and appreciated the posts I’ve been reading throughout the forums. It is so good to know that I am not alone with my symptoms!
I’m Heathwitch and I’m female and in my mid-30s. I live in Derbyshire with my hubbie and five cats. I am a work-at-home company director and my interests include knitting and playing the harp.
I was initially diagnosed with Chronic Fatigue Syndrome (aka ME) and Fibromyalgia about seventeen years ago, when I was a teenager. Since then I’ve worked hard to co-exist alongside my various symptoms and (what I thought was) variations of the same. A few years ago I was also diagnosed with an underactive thyroid so take Levothyroxine once a day. At the start of this year, everything began to get worse – my mobility was declining, my fatigue increasing, my cognitive functions less fast or able. I was suffering intense cluster headaches virtually daily. I tried to adapt my life as best I could – taking more rests, juggling the drugs (I was only on paracetamol, ibuprofen and codeine for pain), carefully managing my time and activities etc – but I was really struggling. At the end of March/start of April I began to experience a burning sensation in my lower spine that did not seem to respond to any of the aforementioned drugs nor anything like cold/hot compresses etc.
In the end I went to one of the doctors at my practice (my GP was on a course that day) only to be told it was sciatica. I was given more codeine and sent away. Two weeks later I was back, but now with altered sensations in my left leg and saddle area. My left leg, which has always been weak, now couldn’t hold me properly and I was falling lots, as well as my foot slipping off the clutch when driving! I saw my own GP who was concerned and scheduled an MRI and also prescribed some gabapentin (100mg 3x/day). He gave my husband and I a list of “red flag” symptoms but didn’t say why, just that if I experienced any of them I should get myself to A&E as soon as possible.
Well, funnily enough later that afternoon I went to the bathroom only to find that I had already “been”, without knowing it. This was one of the red flags of course, so off to A&E we went. I was examined, admitted, then moved from one hospital to another in the middle of the night for an MRI – apparently at the time they were worried it was my cauda equina but thankfully not.
I was taken back to my original hospital for pain relief and kept in the assessment ward. I was seen by multiple doctors and eventually a neurologist turned up. By this point they had the results of the spinal MRI and also an MRI that I’d had of my brain in January (regarding the cluster headaches). It turns out I have lesions on my brain and in my spine, and I have Transverse Myelitis in my lower back (in fact, I have a case of demyelination from T10 down to L3!). I had a lumbar puncture and the neurologist diagnosed me with MS – funnily enough, right in the middle of MS Awareness Week at the end of April/start of May!
I spent 8 nights in the hospital while I had a course of methylprednisolone and they got me on a higher dose of gabapentin and also amitriptyline. They also discovered that I am B12 deficient so I had a five-day course of injections as well. Once the doctors were happy with me they sent me home and referred me to the community neuro-rehabilitation team as well as the local MS Nurse.
Since then I’ve seen the neurologist again, a neuro-rehab specialist consultant, various neuro-rehab nurses, a speech and language nurse, and neuro-physios. It’s a lot to take in and some days are better than others. I am grateful for all the support but I’m finding that not a lot of the support is paying attention to how I’m feeling emotionally nor my psychological state. I am on the waiting list for the neuro-rehab’s psychologist but don’t know how long that will take.
I have been told that my husband and I are not eligible for financial support despite the fact that we need to make some alterations to our home (e.g. wet room, possibly a stair lift, etc) because we are both working. They only seem to take into account one’s incomings and none of the outgoings (!), so we are trying to finance things ourselves which isn’t easy.
Currently, I am no longer driving. I can only walk about 10-15ft with a stick at the moment and about 3 steps without it. I have sensory loss, muscle weakness and a loss of control in the left leg, and also foot drop. The neuro-physio is working with me on this, and I am attempting a referral to wheelchair services because the various consultants, doctors and nurses have all advised that I need one due to my motobility issues and fatigue levels. However there is word on the grapevine that the wheelchair services in my area are not empathetic unless one is terminal. Hmmm. Will have to see how that goes.
I am due another MRI (this time with contrast) on Thursday. After that we may be able to explore DMDs or further options.
Family are not taking this well; I have hardly heard from my older siblings since my diagnosis and my father is doing what he can but is finding it all upsetting. Mum died when I was a child so I can’t turn to her. My husband is an absolute rock doing as much as he can and reading everything he can get his hands on, working out ways to help. And my best friend, though she lives about 150 miles away, checks in regularly with a shoulder or an ear as best she can.
On good days I feel positive and able to work with this, able to cope with all this. On bad days, I feel I am nothing but a burden. I feel incredibly guilty and sad. I am struggling to remain as positive as possible, but it is so hard, and so exhausting.
Thanks for listening,