Just a quick hello

[Dewi1jack]

Hello to all. I hope you are all as well as can be.

 

I've just been diagnosed with Clinically Isolated Syndrome. Had all the scans and tests back in January, when I was admitted to hospital. I also have L'hermittes syndrome. Dr reckons it will be diagnosed as MS, as i have transverse nyelitis and brain lesions. Sorry if my spelling is off.

 

This feeling of pins and needles in both legs and one hand is just hacking me off, as it seems to take so much effort and energy, just to try and get on with life. Very tiring at times.

 

Just thought I would come on here and read up as much as possible. See if there is anything I can do, to help overcome this.

 

Still trying to look on the bright side of life, but still very frightened at the mo, a feeling that has only hit me in the last couple of weeks. Think I believed it would have passed by now.

 

Promise not to come on here and whinge, but I know from experience that support from people who understand, can be a very useful aid.

 

Thanks one and all. Take care

[Scully]

Hello !!! And welcome to our happy band of forums and blogs.

 

We have a lot of members who aren't yet diagnosed, or are in the process of. Some with CIS ans others who have a diagnosis of one type of MS or another. I have Primary Progressive MS.

 

Feeling lost, confused, angry and frightened are all normal responses when faced with the possibility or diagnosis of MS, any debilitating illness come to that. It's all part and parcel of the long road to acceptance.

 

MS, is not a death sentence, many people have had MS for years and are still mobile and working. Others, though still mobile, are unable to work, due to either intense fatigue, of mobility problems.

 

There is still a good life ahead, even if your CIS develops into MS, which it may or may not do. It just means that life changes a bit, and we have to adapt to those changes as best we can.

 

Your pins and needles, and I sympathise greatly with you here, are something that are annoying, irritating, and as you say, a real grade A pain. I think I've lived with mine for so long that I've just gotten used to them now. Notice them more when I go to bed, or am resting quietly.

 

It does take a lot of energy just to deal with them and to function, so it's important to try and pace your day as best you can. Or use a distraction theory. If mine are so troublesome I try and get engrossed into a good book or something to distract my thoughts away from them. There are some medications like Gabapentin or, Pregabalin, that your GP can prescribe to help any sensory symptoms such as yours.

 

It can be hard from day to day coping with fatigue and tiredness. For me the hot weather makes things a whole lot worse!

 

In the meantime, do feel free to look around the forums and blogs, jump into any topics you want to, or start new threads of your own. You will find us a happy bunch despite, or maybe because of MS, and we can get a little crazy at times.

 

Scully

x

[Dewi1jack]

Great to be welcomed and some good advice. I haven't learnt to pace myself, still trying to go flat out. But being a stubborn muppet has always been a fault of mine!

 

Thought I had accepted it, I obviously hadn't. I really need to accept that I am powerless over this.

 

Consultant has put meon Carbamazapine (Tegretol), but doesn't seem to be helping much.

 

The clinical nurse has left me more confused than the consultant who diagnosed. Reading some of the forums and comments, seems I'm not the only one in this boat.

 

It's good to know there are people on this site, who know how I feel, as they've been there. Don't mean that it is good people have the illness, would rather everyone here was fit and healthy, hope you understand what I was trying to say. Have always found it easier to listen to people who have experience of whatever problem I face in life.

 

Anyway. thanks once again.

[Hezza]

Hi and from me too.

Like Scully I have become used to some of my more persistant symptoms. If the medication that your consultant has given you doesn't seem to be working then I'd recommend contacting your GP, Consultant or Nurse (whoever you feel most comfortable approaching) to discuss it and asking if they can try something else. There are often a few different medications that may help with symptoms and what works for one person doesn't necessarily work for another so it can be a case of trial and error to find what is best for you.

 

You might find that not pushing yourself quite so hard will help with these symptoms too. I know that my twitches etc get worse if I over do things. This doesn't mean you need to stop doing things perhaps it would help to look at how you go about doing them and, for example, maybe break tasks down into smaller chunks.

 

As for how you're feeling and getting to grips with your CIS diagnosis, acceptance takes time. There are no hard and fast rules and sometimes it seems like one step forwards and 5 steps back. Hopefully you will find the forum a helpful and friendly place to be as you go through it.

 

Promise not to come on here and whinge, but I know from experience that support from people who understand, can be a very useful aid.

 

We won't hold you to this promise so if you ever do need a whinge or a moan go right ahead. We all need to let off steam sometimes

[fourdogs]

Hello , welcome to the site , pacing what you do is one of the hardest things to get your head round I think. I can do wonders in my head Putting it into practise is another matter .

You do get very frustrated at not doing what you could before , I used to be quite hypo and stuff had to be done straight away but not any more , body let's me know trust me so you have to give in to it.

Hope you like our site ,lots of stories to read from every angle and you can moan whenever you need to , take care x