Hello, from the sidelines

Hi all, I have been looking around the forums and the articles for a few weeks now. It’s all very interesting and a little scary. But what is wonderful is the support you give each other. So I’ve ventured off the sidelines to introduce myself and tell my story and hopefully get a little and give a little help. I am 34, I was diagnosed with M.E in my final year of university (14 years ago). It got to the point where I couldn’t walk, I slept 20 hours a day, felt constantly exhausted. I deferred my final year, and after a very bad six months turned a corner and started to be able to manage simple things like walking, washing etc. I got well enough to finish my degree and start work. Since then I have had a relapse at least once every year, in varying degrees of severity. My sickness record at work is appalling, and I am currently on a long term disability scheme with the company as I have now not been able to work for over a year. I am very lucky to work for a large company that provides this. (Even if their duty of care, while I was working was nonexistent!) Over the last few months I have got new symptoms, which took me to see my GP. I don’t normally go to the GP with new symptoms unless they are significantly different, and they stick around, as everything gets dumped into the M.E pot. My symptoms are, shooting pains in my legs (which cause me to fall), numbness and temporary loss of sensation in my arms. Burning/tearing pains in my skin, tremors and eye pain. My fatigue has also worsened, but that is not unusual for this time of year. After a few visits (because things were getting worse not better) I have been referred to a neurologist, and have been put on (from what I have read from the forums) a very low dose of gabapentin. I already take Amatriptalyne for the pain at night, I also take Sertraline (an anti depressant). To remain on the long term disability scheme I have to have a review by an occupational health doctor every 6 months. A few days ago I received the most recent report. It made me furious! I have yet to mention, that I also suffer with severe depression, and have done since my early teens. In the recent occ health report, my physical pain and problems are sidelined, and everything in the report paints me as a psychological write off! All physical symptoms are attributed to my “low mood”. It’s so frustrating. I have no problem admitting that I have a mental illness, I don’t deny it. I am aware that a “low mood” can make pain “appear” worse. But I know my mind and I know my body and I know the difference between depression and collapsing in the street due to a sudden rush of pain. I know this is a common issue, I have read on depression forums, that all and every other health problem can be put down to stress or depression, by perhaps incompetent or lazy doctors. But why? I used to be an active woman, I was sporty, I was involved in the community and politics. That’s the life I saw for myself, not this existence, where everything has to be paced just right, and I need help with the simplest of tasks. Yes I am depressed, who wouldn’t be with this situation? I haven’t had an appointment through yet from the neuro, but I have had a letter acknowledging the referral, so things are in motion. I have a good supportive GP for the first time ever. I count myself very lucky for that. I have seen on the forums that, a few people had M.E or CFS or Fibromyalgia diagnoses before eventually being diagnosed with MS. It makes me wonder, if tests had been done at the beginning rather than waiting for things to get so bad they can’t be ignored, could things have been put in place sooner, to mean symptoms did not become so severe? I suppose what ifs are not helpful. Anyway! So hello. This is me, my story so far. Sending everyone best wishes and a hopes of few days stress and pain free xxxx AmieLouise

Hi I have only just posted on these boards myself as I was diagnosed with MS last Tuesday. I’m 32 years old. My main symptoms have been the numbness in arms and now my right leg. I had an odd spell in April when I kept losing my sight and my eyes were moving rapidly. Last month I had optic neuritis. Fatigue is creeping in a bit. The positive is that you have a good GP. Hopefully you may get an MRI to give you some answers. Good luck with it all Lorna xx

Thank you. How do you feel now that you have a diagnosis? And how were you diagnosed, if you don’t mind me asking? There seems to be so many different ways of getting an actual diagnosis, and so many ways of being fobbed off! I’m just curious. Good luck to you too AmieLouise xx

My GP started with blood tests and an X-ray as my first ‘thing’ was sore skin on my chest area and loss of feeling in my arm and hand. When that came back clear I was referred to the neurologist who later did some electrical shock like tests on my hand-again they were fine. I then saw the eye Dr on a trip to A&E about my eye, it was her that suggested I be referred back to the neurologist as she thought MS needed ruling out. I had my head and neck MRI about three weeks ago and was seen last Tuesday. I wasn’t told too much other than there is a ‘quantity’ of white matter showing, which along with the many isolated symptoms gives the diagnosis. I feel ok. I wasn’t expecting it as such as the neurologist who I had seen about 4 times in total, had never mentioned it as a possibility, nor had my GP. I had no idea what MS is and am still trying to learn. I feel some sense of relief that I wasn’t going mad and imagining it all. I started to feel like a pain with the number of appointments I was having that didn’t lead anywhere. Other than that though, I feel scared. I can already feel my mood dipping. I also suffer with depression that has followed on from a close bereavement 2 years ago. I’m not in a bad way, but the subtle signs like struggling to get up in the morning, are creeping in. I’m worried about how it’s going to impact on me but also trying to be positive. I’m also trying to focus on getting my foot better., as it’s currently numb and annoying. I suppose I was lucky in that I was blissfully unaware of MS and didn’t have to fight for a diagnosis. I will say though that we all know our own bodies and what’s right and what isn’t- don’t allow yourself to be fobbed off as you need to know and have the right to know :slight_smile: xx

Thank you for such a detailed and honest response. I’m sorry you are feeling low and depressed and I’m very sorry for your loss. Thinking of you and sending you good positive vibes xx