I have been posting comments here for a week or two I am not formally diagnosed yet with no confirmation of PPMS. I seem to have been assuming and preparing for that possibility. Not surprisingly I am involved in a train wreck with my family who insist I am giving up and assumining the worst, they insist that I should just carry on with my life doing things and planning for the future. Fair enough but I am physically limited and it seems to be getting more difficult day by day. To Hospital next week for lumbar puncture and more tests.
Should I
Just carry on as best I can and stay away from the internet.
Wait and see what happens
Continue the process of finding out more about MS and trying to come to terms with it, modifying my life accordingly.
It’s an attitude thing but what I fear is that I will try (1) fail and will be seen as giving in even when I’m not. You see my sypmtoms are visible only to me, how do you go about making others aware to the extent that they make allowance for you without becoming an MS bore or playing the role with a stick?
or is there a (4)?
Meanwhile off to work for the final time which should be fun a celebration of good times past and good friends.
Hi little John, I understand what you are going through. The period before diagnosis is scary. The first time I went on the Internet I recoiled in horror and vowed not to go back on it until I had a diagnosis one way or the other. Your family are scared for you. This is their way of coping. There is no right or wrong way to behave you just do what you have to do to get through this difficult time. This is your day, enjoy! Mags xx
I have had this now for 10 years and it takes time to accept it , we are all different, youe family cant understand what you are going through , because a lot of it is invisable and if you are like me you dont want to dwell on it. Mags is right you will find a way to cope with it , but at your own time and pace.You are right about the internet, we have a local branch near where i live I dont go as there are a few doom and gloomers so dont need it, however he sent the interview with JK Rowlings discussing her late mum, now after 30 seconds I switched it off , thought that it was too graffick, if you need to ask questions until you get diagnosed ask here, because unlike family and friends we know what you go through, and can maybe come up with a few suggestions to cope with it.
It is a scary time both for you and your family, but you have to do what feels right for you. It can be hard on family members, cos they have to watch but feel helpless to know what to do or say.
The internet can be a dangerous place to go, as Dr Google can make you think you have everything wrong with you, my advice would be to steer clear of it.
Give yourself and your family time John, best take one day at a time.
Hi John, It’s so hard for families…they get scared too and don’t always know what to do or say for the best…that’s why this section of the forum is so great…we really do know what you’re going through. Invisible symptoms are so hard to deal with BUT if people can see them or they can’t they are, never the less, very, very real. My advice, for what it’s worth, is take one day at a time and don’t try and put on a show for people…it’s exhausting! Just be you and behave as you feel you need too. You will find some folk can’t handle it but so be it…it’s SO important for you to do what your body and brain want you to do. If you try and do otherwise you will end up making yourself worse. Hope that helps even just a tweeny little bit! Take care of yourself and good luck with the LP, mine didn’t hurt at all…just be very careful to lie very still afterwards…otherwise you can get the mother of all headaches. Nina x
A little knowledge isn’t always a bad thing, it can help, certainly to alleviate some of the fears but yes, Dr google can be very bad.
My husband banned me when we heard I’d been referred to Neuro. The only thing I did google was Attaxia, so that was a bit daft as not my diagnosis at all but just one of my symptom!
If I’d known anything about MS then it’d have saved my MS nurse some reading - the “oh, I didn’t mention this to the Dr as I didn’t think it was anything to do with it…”
You’ll find your own way and you’re here so… we can all talk the socks off you It helped me a lot to see/her what it was like for others.
Hi John The symptoms you describe of physical limitation aren’t in your head. Listen to your bones, someone once advised me, and it’s good advice. If your body is telling you you’re fatigued, then rest ! It may not be ppms after all, but something is going on and you don’t score points for carrying on regardless. Ask your family to stick with you, you’re having a tough time and you need them to bear you up. Good luck, fella! Kev
Which course of action do you want to follow? You are the one having the symptoms, you are the one whose life is being most affected by whatever it is you have. If doing some research and trying to come to terms with the potential diagnosis is your preferred way of dealing with your situation, then that’s what you should do. Just be prepared that if/when you do finally get a diagnosis (whether MS or something else), it may knock you for six for a while. I’d expected my diagnosis for 18 months by the time I got there and I was still left reeling mentally.
John I agree with what everyone’s been saying, you have to do what you’re comfortable with. You do need to listen to your body and rest when you need to. If your balance is poor and you’re at risk of falling, don’t risk injury and get a referral to physio or buy a stick, they’re really cheap on eBay. I got my dx almost a year ago and my family were like yours, saying I was looking at the worst outcome but inside I knew ms was the most likely dx. I just kept away from the topic with my family, they could see enough to know what I was struggling with physically.
The internet is scary looking up symptoms etc, just wait until you’ve had your hospital stay and LP before reading more horror stories. Just remember we’re here to help you. No matter how “comfortable” you feel that you’ll be dx with PPMS, if it does become a certainty you’ll still have trouble accepting it. For months after I got my diagnosis I kept looking for alternatives and wanting to get my Neuro to re check my results. It was a huge shock.
All I can suggest is that you live as if you have a dx and do what your body allows you to do and rest and accept help when you need it. No matter what your final dx is, your body won’t get better/worse just because your symptoms have a name. Nobody here is bothered whether you have ms or not, you have the same limitations as we do and we’ll help and support you as much as we can. Your family love you and don’t want to hear you have a chronic illness, let them live in ignorance until it’s a certainty, it’s probably easier for them.
You have friends here who understand, rant to us and just enjoy the company of your friends and family. Take care.
Yesterday went very well, I am grateful for your thoughts, as I suspected there is no easy answer to this one but I’ve been able to pick out a few pointers I think. I am going to mull them over a bit and because there is no clearcut way forward I think it is best that I take things day at a time at the moment, be glad for what I’ve had and make the most of today. Keep Calm and Carry On.
Rather a wet day here today, which is good the garden looks very green and summer is on the way.