Hello!! Pre-diagnosis and just joined the site.... my story so far!

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!! :smiley:

Hi,

Sounds similar to myself, it first started in February for myself also a mild attack numbness on side of my face I thought it was bells pasey without droop but went to doctors they said it was migraine as I had migraines on two occasions a week before and a day before but I wasn’t satisfied with that as I read that numbness usually lasts a few days then goes I had mine for two weeks I got in touch with my friend who is secretary there and asked which would be the best doctor to go to as I wasn’t satisfied with the last one.
She made me a appointment and this doctor said straight away he didn’t think it was migraine but me on a emergency appointment to have a mri had that in few days and went back for the results he then said he thinks I have ms or have had a stroke and referred me to a neurologist.
I was stunned by all this as I knew nothing about ms, when I went to see neurologist he was awful to me told me things like this just happen and it was one off and hadn’t even looked at my scan basically told me to go away.
The end of june I had a tingling in my index finger and with a day or two the numbness had spread up my whole arm and then also my whole leg on same side then a few weeks later the same on my opposite side it is still numb now but not as bad, within this time I had extreme fatigue and face pain, eye pain still got the eye pain and I get twitches all over.
I went to see neurologist a few weeks ago he has taken me more seriously now and hurried up lumbar puncher and another mri which I had last mon and I’m going back to him on the 21 nov I have no idea yet the results of the tests.
I’m 30 in January that what makes me suspicious also as I’m prime time age for it also there are auto immune diseases on my dads side of family and it just isn’t normal what is going on its gotta be something.

All the best
mel

I think you have done the right thing flagging the latest problem up to your GP and I expect he/she will want to get the consultant’s view. I don’t think there is much for you to do except wait for the outcome of that, but it is definitely a good thing to keep telling them when new/recurring things are happening. Regardless of whether they want to do anything further at this stage, they do need to know. It’s a strange old time though, this waiting and wondering.

Alison

x

Hi Mel,

Sorry to hear you’ve had a hard time of it, I hope you get some more answers soon and am glad they are taking you seriously now, I’ve been lucky in that everyone I’ve seen so far has taken me seriously, though I do question my own sanity at times!! Keep in touch and let me know how you get on.

Hi Alison,
Yes, that’s what I think too, the doctor this time said she will contact the neuro dept. and let me know if they want to see me, I’m still hoping they won’t this time but am glad they will have it on file if that makes sense? I see this as the same as before and therefore they won’t diagnose with these symptoms so why would I want to sit up at the hospital for days on end like last time?!

Thanks both for replying, I know my OP was a bit of an essay!!

Hello and welcome

Sounds like you’re doing exactly the right thing. If things get worse do start banging on desks though!

Karen x

Thanks Karen, and don’t worry, I will, I’m not one to sit around when something is wrong but I’m also not one to want to take up Dr’s precious time if I don’t need to :slight_smile:

Hi I had an isolated episode nearly five years ago my leg just went limp with no feeling , went to the docs they sent me to a and e where they totally got confused and sent me down the route that I had a back problem . They sent me for a MRI on my back then sent me home , couple of weeks later I had a phone call to say I needed a MRI of the brain went to see a Nero and he said I had a high chance I had ms totally dumbfounded , but singed me off as was well . That was until late last year my leg stated playin up and the fatigue I had never felt anything like it before but I was silly and didn’t go back to the docs until April this year . I finally saw a neuro around six weeks ago who was very sure I’d had another episode so wanted to do another MRI which I’ve had done today brain neck and spine . Soo hard the not knowing . I hope u get some answers soon . Xxx

Hi I have been dx with vastibular migraine, this has been going on for 12mths. I am currently appealing against my ESA that has been stopped, I was awarded 6points…Dont really understand this. What bother’s me is fatigue and I am finding it very hard to deal with, I have told my GP, but she does not do anything. My neuro took bloods all came back normal, however 2 were slightly high due to imflamintry!!! I asked my GP what does that mean, and she said she did not know.

I feel that no one listens to you, does anyone feel like this?

Jan