Forum

New Diagnosis...

Hello All,

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,

Heathwitch

I just wanted to offer hugs. I couldn’t just read and run. You’ve found a good place for support.

On families, I am not sure my Dad realises the effect MS has had on me, but my Mum and sister both do. I think that recent holidays with them have helped them appreciate more ehat I can and can’t do. It may be that your siblings just don’t know what to say and are worried about upsetting you if they say the wrong thing. Or if they don’t see you that often, they may find it difficult to understand what you are going through.

Having good days and bad days is normal, it takes time to come to terms with a life-changing diagnosis. I hope you don’t have to wait much longer to see the neuro psychologist.

Take care.

Thank you, Mitzi. I really appreciate the hugs :slight_smile:

You raise some good points about my siblings. We don’t see each other often but do communicate via phone, text, Facebook, etc. I’m hoping to see them soon and perhaps through seeing how things have changed it may help (or hinder!) their understanding – or perhaps you’re right, it is difficult to know the right things to say.

I was talking with my Dad last night and he said that while he had understood that MS is, in the end, a degenerative condition, he’d not really appreciated that until he’d seen me struggling when we were out together at weekend. Comparing that to how I was last year really freaked him out and we had a long, open chat about it – no doubt will continue to do so when I next see him for our weekly lunch.

One of the things that is helping me is meditation. I’ve done it for years, so it’s rather natural for me now, but it really does help to go into that still, quiet space when emotions get too much or I’m struggling with pain or mobility issues. Helps me regain some sense of calm in amongst all the madness.

I hope you’re having a good day today! Mine will hopefully involve a little work, a little knitting, and some rest. :slight_smile: x

Hi Heathwitch and welcome.

I have just done a meditation course which I enjoyed but am finding it hard to do a home.

Do they think your problems all these years have been MS ? Is the transverse myelitis separate?

I have been in limbo fo years- starting in 1991 when I had my first clear MRI. They thought my symptoms were due to radiation treatment I had for hodgkins lymphoma. Then I was fine until 2005 (bit more numbness) and had another clear MRI. The fine until 2008 were I had a myelitis attack (didnt have MRI). I recovered well but then year later foot drop started to appear. Saw neuro in 2011 and lesion was seen on MRI. The radiation I had in 1990 was blamed again.

Saw another neuro who thought MS but as LP was clear I was told I had suffered from an isolated attack of TM in 2008 which caused the late development of foot drop.

Walking issues started in 2010 although I am still quite mobile - I just need to hike leg up so my foot doesnt trip me up. I am on baclofen although I am going to try the baclofen pump.

Take Care

Moyna xxx

Hi Heathwitch, sorry to have disappeared for a few days. I was busy last week and on Guide camp over the weekend (I’m a Guide leader) and I still haven’t found time to catch up with everything!

I talk a lot with my Mum and sister on the phone, less so to my Dad (although I am sure Mum tells him important stuff), but I think that my sister, in particular, got a bit of a shock at Christmas when we were face to face for the first time in 18 months - first time since I developed obvious symptoms (my balance and walking are noticeably affected). With Dad, I can’t quite work out if he doesn’t understand or if he just doesn’t know how to talk about it. It varies between being good that he doesn’t mention it, just treats me the same as he always has, and being frustrating that he doesn’t understand the impact MS is having (things like I tire more easily than I used to, I can’t walk as far or as fast as I used to).

I’m still working full time, but I’m learning to pace myself. That’s much easier to say than do! I occasionally schedule a weekend for just being completely lazy - I’m due one now but I won’t get it for another couple of weeks! And yes, I know about the good days and bad days thing. I think the weather helps with that - I seem to have had more good days and fewer bad days while the weather has been warm and sunny.