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Advice please . . .

Dear all. I am 34. Ended up in hospital just over a year ago after experiencing ‘stroke like symptoms’. Since then I have had lots of strange things including pins and needles in my hands and feet, a lot of forgetfulness, heavy arm and the list goes on. I have had check ups since leaving hospital in August 2012 and at the time of these appointments I was feeling fairly good. I guess, getting used to all the odd feelings and just getting on with it. I was advised at this point that I was a Clinically Isolated Syndrome! Despite being told when I was in hospital, after CT scan, MRI and Lumbar Puncture that I had MS. I am not currently receiving any treatment. I started experiencing numbness from my feet up to my chest which has continued to worsen and have constant pins and needles in my hands. Can hardly feel my feet and therefore making walking awkward. I’m finding it very hard to tell the difference between hot and cold. I also have a very uncomfortable tightness just under my chest which has worsened since it started. I saw my GP after 3 days of having these symptoms, she said she would request an urgent appointment with the MS consultant at one of my local hospitals and advised that I should expect to be fully diagnosed with MS and would probably be told about treatments. GP advised if things change in any way to get to A&E and get checked. The uncomfortable feelings got to a point where I was very scared and so strange that I went to A&E. I saw a doctor who did various checks and consequently I was sent home with a print out of possible MS treatments and advised to make myself familiar. The doctor at the hospital called straight through to the MS clinic, also requesting an urgent referral. It has now been 4 days since leaving hospital and I don’t feel any better at all. I do not know how long I will have to wait for the appointment? Whether I will be given medication at the appointment? Or what to expect in the way of timing etc etc. I have 2 young children and at the moment I am unable to look after them without help. :-((x Please can anyone help? Give advice? Or even just relate to this post? Please. Many thanks for any help or advice

Hi Charlt

You are at the worst point in your journey, where you are having what must be very firghtening symptoms and you have no control whatsoever.

I’m sorry my own experiences with MS were very different to yours. However I am sure somebody will answer your post whose experience is more relevant.

Deep breaths, if this is MS it isn’t the end of the world. New treatments are being developed all the time to control MS and its symptoms. MS is not the disease it once was and there is every reason to be optimistic abouut the future.

Good Luck!

Anne x

Hi hun. I`m sorry to hear of all the awful problems you are experiencing.

Why not ring your GP, to see if he/she can check to see when you can expect to be seen?

Trouble is, what is urgent to us, may not be urgent to the medics.

Hopefully you`ll get that appointment soon.

As Anne says, having MS isnt the end of the world. Many MSers live good and happy lives.

I know it is scaring you silly right now, but hang in there, yeh?

luv Pollx

I agree with Poll here. It might be a good idea to call the GP and ask for a telephone appointment. Tell him/her that you are no better and they might be able to find out whats happening.

You may be waiting for them to fit you in to repeat the mri.

You may simply be waiting to see a neurologist to discuss your treatment options. The waiting when you feel so ill is awful but unavoidable i’m afraid.

I wouldn’t think you will be given medication at the appiontment but the neurologist will tell you what is available and when you will be able to start. Have a look at the information you have been given and take a look at the ‘msdecisions’ website which tells you about the dmd drugs. It sounds to me with them giving you a print out of medication that they will start you on it soon. What is on the print out? Is it Rebif/Avonex/copaxone?

I was diagnosed when i had a newborn baby and i remember that struggle so i can sympathise. Take any help that is offered and don’t feel guilty about it.

Please remember that when you get on the right medication it can make a huge difference.

Teresa.x

I can’t really help with your question I’m afraid but I’m amazed at how differently we’ve been treated. I’m still suffering from the symptoms of a clinically isolated syndrome having been admitted to hospital in August with stroke like symptoms but I have been given an MS nurse so if I do have a relapse (or any other worries) I can ring her to hopefully get referred for steroids if I need them. I do hope your wait isn’t long and that you get support soon. Ps I also got told in hospital that I had MS.

Hi Charlt

My story is very similar to yours. I was admitted to hospital the first time with slurred speech and hand weakness. Had an MRI and lumbar puncture, was told I had MS by a ward doctor and was then told by a neurologist that I had had one episode of demyelination. Told to go home and put it out of my mind (as if!) and it would only be MS if another incident happened which could be in six months, a year, five years of maybe never.

Just three months later, I went back to my GP with tingly/numb hands and feet. He faxed the neurologist for an urgent appointment and I was seen a week later. By this time my feet were totally numb, I could barely walk and the numbness had spread to my waist. I also had the MS hug (I suspect that is your uncomfortable feeling just below your chest - does it hurt to take a deep breath?). I was admitted to hospital again and had intravenous steroids for 3 days which helped my walking tremendously. Unlike you, my son was 15 so, although he couldn’t be left on his own, at least when I returned home he was independent for the most part and was able to help me a fair bit as I was still very weak and slept an awful lot. He was also at school so for a large part of the day I could just rest in my dressing gown :slight_smile:

I would ring your GP again and chase the referral. You really need to be seen by the neurologist asap so that he can (a) complete the tests to confirm a diagnosis and (b) start you on steroids as soon as possible. When in a relapse the steroids work best if they are started early on. You can then discuss the DMDs at a later date when you are over the worst of this.

Just to reiterate what others have said, this may feel like a terrible time for you and is obviously a very worrying time but if you do have MS it is perfectly possible to lead a full, happy and active life. It isn’t easy at times, but when is life anyway? I had an awful first year but then went on DMDs and had no relapses for almost 4 years. I still work 32 hours pw, still have a full social life, still take holidays etc. I would never have imagined that at the outset when I had such a severe relapse at the time.

For now, accept whatever help is offered and nag your GP and hospital every day if necessary until you are treated for this. Make them aware that you have very young children that need you. Unfortunately because it isn’t a life threatening condition, we don’t get treated with any urgency but that isn’t very fair on us because we are the ones sitting at home worrying and trying to cope with the awful symptoms and trying to live normal lives. Once you get the right treatment, it all becomes much easier to cope.

Tracey xx