I have MS.
My next pleasure is the LP. My Neuro explained that the LP is something he likes to do before going down the DMD path. In the meantime, I will be contacted by the MS Nurse and he will arrange some Neurophysio to help with gait.
Not a long post tonight, I feel weird, I wanted my GP to be wrong. I posted on the Society forum and as usual Rizzo was there with her usual kind and wise words Xx
p.s I will keep posting about being in Limboland, I just need to get my head around today.
I would like to address this today and its in response to a fair amount of Limbolanders on the forum. There is a lot of fear around you see and I want to try and put a positive spin based on my experiences.
When I saw my GP a couple of weeks ago, one of the things he said to me was, ‘you have probably had this for a very long time’ (he is sure it is MS). This keeps churning around in my head and I have com to a very positive conclusion – I have made many achievements, yay!!
I have always managed to keep in work, until 2011 when I was made redundant (this I note is becoming the norm :/) I became a mummy. I have worked for many years in the veterinary industry, which is a real passion and love of mine. I have studied in Health & Social Care (and there you are stumbling doing a degree with honours!!), the old GNVQ which is another educational triumph for the powers at be!!! (not) and looked after the elderly; a great time in my life which I will always hold dear and never forget. Completed the foundation years of Counselling training and I just need to get the finances in order so I can complete my Diploma, which I WILL do.
You get the gist. I really wanted to show that if I have been suffering from MS for many years, I have still achieved, still got what I wanted. Having children is something I always wanted and before I became pregnant, I did worry a lot about my fatigue. My son is 7 and is my sunshine, he is the definition of unconditional love. I have fertility issues and we really wanted another but its not meant to be. I am 40 and concerned for the future but if I could get pregnant I would have another.
Please don’t worry about what may happen, it is easier said than done I know but if the time came and I lost quite a bit of my mobility, I am hoping that I will have less if onlys than what ifs.
I feel sad at the thought that I may not be able to jig about to music while doing the housework or ironing. So now, I make sure I have a little wiggle daily. This morning it was Justin Timberlake on one of those music channels, it was going through his back catalogue. I want to do things while I can.
As soon as you lie in an MRI scanner, you realise this could be serious, it certainly felt serious to me. I am going to do an MRI scanner experience post tomorrow. I want to talk about that as a single experience to try and help anyone who is currently waiting for their scan.
Not entirely sure how this will go today, so I will just go with the flow.
It is a week today since my GP told me that my results look very much like MS.
I came home, my husband came straight out to find out what the Doctor said. He was shocked, very shocked. He went and got my mum, as she had phoned to speak to me and he said I was at the Doctors. My mum would have worried herself silly so I had no choice but to tell her. It went well, she was upset etc., but here is the thing, I have been ill for a very very long time. So the shock here is that it now has a name.
This is where the confusion comes in. You see, I have never spent a single day as an adult well. I have never been diagnosed with anything in particular, just told it was probably ME and to go and buy a book on it. Which I did.
Now, I haven’t received any support over the years from anyone, just fobbed off and laughed at. Then, suddenly, since last Monday, people cannot do enough and feel guilty. Why?? I am grateful for my mum now showering me with concern but did I really have to be diagnosed with a degenerative neurological disease to get it? ME is not taken seriously, and I admit to not giving it much consideration either, it was the label given to me without any investigation. That is a whole other discussion.
I find myself confused about this and the fact my mum is telling family members when I asked her not to is just not helping. It is her way of dealing with it obviously. It isn’t her news to give and although my GP certainly knew what he was looking at, I still haven’t seen my Neuro yet.
Once I see the Neurologist, I can get on with whatever he tells me. I will follow what he says to the letter (I’m a bit like that). I will go and have a detailed chat with my GP that everyone hates at the moment. I feel lucky to have him, he has known me since I was little. I am looking forward to working with him to get my life as good as it can be!
I am incredibly lucky to have support now but I have always needed it, at times desperately. So for today it’s bittersweet.
Tales of a lady out of limbo and into MS land 