Waiting for MRIs and LP

Hi guys,

I already posted my case but could not find the original post so apologies in advance.

I need some psicological advice from you cause I’m honestly getting crazy, even starting to think if it worth living like this.

Here is my case:

  • Spanish, active, 27 years old sportive guy that works in the IT consultancy market.

  • First event: January 2012 when I got through a de-myelinization process. Symthoms were just numbness in left leg and right hand. 5 days hospitalized taking IV steroids and then progressively reducing every week for 1 month. Did a LP that was clear and and MRI that showed a spinal cord inflammation. I got 95% recovered after two months. Only thing I was still having was an abnormal temperature feeling in the left leg.

Did another MRI in october 2012 that evidenced a new small lession in the brain, meanwhile the one in the spinal cord had dissapeared.

  • Second event: Late April this year. Started with numbness in both feet but developing really quickly in difficulties to walk, un-balance feelling. Went to a private neuro here in London and had a prescription for Methyl-prednisolone (500 mg - 5 days). Took them and started feeling better. The week after I even came back to normal life but from that point on symthoms got worse randomly. So I was given a another bunch of steroids (but far less amount this time, just 60 mg every day decreasing by ten every five days, at the moment I am on 30mg per day). This new bunch if steroids is obviously doing nothing, I would say they are making me feel worse, as I developed dizzyness 3 days ago which I hadn’t before.

Well, after several visits to A&E i finally started the process with NHS. I had an apointment yesterday with a neuro and MS nurse and they requested a new MRI + new LP. They say this looks like MS but they want to make sure. Also they took several tubes of blood to discard any mimic MS thing.

Yesterday was the worse day in my life by far. During the exam with the neuro I was feeling reasonably well but just when we finished and I stand up my legs got so numb and electrical that I needed to sit down for 1 hour. Later on during the day I took a plane with my GF to come back to spain, where I’m following the process with the public health department in Spain as well.

I have gad 2 kidney stones during the last year, that the neuro consultant said might to do with all this symthoms… ?

So… It will take a while to get a diagnosis, however what is driving me crazy is not really if this is MS or not, but the fact that it’s been two months already fucked up and still going. It this keeps like this I’ll lose my job (I’m freelance).

I don’t know how common are my symthoms in RRMS, I’m afraid this looks more like PPMS, isn’t it? When I try to walk after a period of rest, I just get a enormous and painfull numb (or electrical) feeling running through my legs, is so strong that during the “attack” only thing I can do is cry. Is this normal ? However there are some other times that even after a period of rest I can walk “normally”.

I can not change my mind now, the only thing I can think of is “Is my life gonna be like this or even worse from now on? If I don’t recover from this relapse I’m better dead… I’m just gonna be a lack for the people I love”…

I have also this L’hermite sindrome, although is going out slowly. Specially during those “attacks” where I have to sit down, if I push my neck and hip down I just feel lots of electricty running through my legs. The thing is that during the first weeks the electrical thing was always there and now is only when in within one of the “attacks”…

I have to go back to UK in 2 weeks and keep working but I’m just so afraid I’ll still be like this… Last ay in the office was a nightmare really. Is not only because of these “attacks”, is also that I’m always dizzy, unsteady and not able to concentrate properly.

Any advice guys ? I hope some of you got though this but ended up seeing a bit of light at the end of the tunnel.

Thanks in advance, and sorry for the big brick written down.

Have to post and run, but if it is MS, it will be RRMS from what you’ve said. PPMSers do not get 95% improvements. Sorry for such a short reply! Karen x

Hi Hector, I agree with Karen (Rizzo). If it is MS, then it sounds like Relapsing Remitting is more likely to be the type; although generally speaking ‘which type’ it is, becomes more obvious over a period of time. Right now, there’s little more you can do other than looking after yourself, listening to your body and doing what’s right for you. The future is something I often worry about too and it sends me into a right ole blue funk every time too; will I be able to work etc etc. How much we worry isn’t necessarily something we have much (or any) control over though, but then neither is the future - with or without ms. Once you have a diagnosis, treatments are started and medications are sorted, things will be completely different to how they are now, and how they have been for you recently. Medications alone can make a tremendous difference to how we feel on a day-to-day basis and will therefore have an impact on your work too - for the better. Having better control over your symptoms will help tremendously, and in time you’ll learn what works for you and what doesn’t. Things like the heat and cold can aggravate symptoms for example. In my opinion, it’s best not to make any big or life changing decisions until you have a firm diagnosis of some kind. It’s hard, yes, but you will get there and there is light at the end of the tunnel. Take one day at a time and if your symptoms become worse in the meantime, contact your nurse. You do not need a diagnosis to get medications to help with symptoms. I hope that helps. Good luck, let us know how you get on. Debbie xx