Good morning! I just wanted to say hello and give a little detail of my current situation, which from reading through a few posts, seems to be a common situation!
I have joined the site as back in Feburary of this year I had some numbness in the back of my left leg (hamstring area), which over 5 days progressed up to my armpit. I had 3 visits to my GP surgery which eventually resulted in me being referred to the hospital, I had blood tests, other tests, eye tests and an MRI and was kept in overnight as the MRI showed a leison on my spine and they wanted to re-do the MRI with contrast and keep an eye on me - as the numbness was spreading and they were concerned it may affect my breathing… I was a MESS!! The person who dealt with me in the initial stages had an awful bedside manner and made me worry so much, however, the following day, I saw some lovely Dr’s and a great Consultant who I am still under at the moment. The numbness eventually subsided but left me with fairly bad fatigue (I had never known what fatigue was until then, I just thought it meant tired…!!) I wasn’t sleepy, I just couldn’t do very much and my body just needed resting, once this was gone, I went back to see my Consultant who sent me for another MRI to check if the leison was still active and it came back that it wasn’t, which I have since learned was a very good thing as they had originally wondered if it was a tumour… my Consultant told me that what I had was CIS (Clinically Isolated Syndrome) and that while there was a chance that I would develop MS at some stage in my life, as my symptoms had completely cleared up, I had a chance of never having any further problems. I carried on as normal but with the thought in the back of my mind that I would develop MS at some stage in my life, be that a year, 10 years, 20 years… whenever. Then in August, I had numbness in my right leg, it started in my calf and if spread around the lower part of my leg, I was feeling tired and I called my GP who again referred me to the hospital, this time I saw a lovely Dr who redid all of the tests, telling me that she was expecting to see another leison and that it was likely to be diagnosed as MS… she also did the lumbar puncture, as I had had 3 failed attempts in Feb. This time I wasn’t a mess, I knew this would likely happen ar some point and although it was a little sooner than I had expected, at least this time I knew what was happening… The MRI came back clear, my bloods all came back fine (a couple of small things but I’ve been told nothing they would worry about) and the lumbar puncture came back as me having bands in my spinal fluid… I had a follow up with my Consultant and went along knowing that my symptoms had cleared (this time in just 2 weeks - although the fatigue left me in bed for 3 days this time) but that I was likely to be diagnosed now, surely the bands in my spinal fluid but not in my blood were a clear sign, right?? Apparently not, the Consultant told me that they would not yet diagnose me as the time between the ‘episodes’ was not very big and that with the symptoms being the same and clearing, as well as no new leisons and no active ones, it could be that is was linked to the last time. However, here I am, a week into symptoms of numbness, again in my left leg, but this time from my buttock down to my toes and a little limp seems to have appeared too. I saw my GP last week and am back there today, to be honest, I think I’m happy to ride this out as it’s the same symptoms yet again and only separated by 2 months, but really I need some advice from my GP/Hospital as to how to play this latest set of symptoms…
If you have managed to read this far then thank you!! And know that while it is a worrying time, I am a positive person and while MS is not a nice thing to have, I very much have the attitude that it could be worse… I know I have been lucky so far, with few symptoms and generally sensory ones and fatigue but I am prepared that this may well get worse and is going to be something that I have to live with but I am determined that it will not beat me and I will not feel sorry for myself (well only occasionally, I am human!)
For interest… I am a white female and was 30 years old at first onset of symptoms… funny that?!!
If anyone out there has a similar story to me, I’d love to hear from you, especially if you are still in limboland like me, it would be nice to have someone to chat to!
I hope I haven’t bored too many of you and finally… HELLO!!