Hi I was DX last nov after a long wasted time, mostly me. So now I am either RRMS or PPMS no one is sure, took me this long to accept I have MS . I see the neurologist next week so hope he has some answers. It seems to be down hill since nov . Been reading this forum since dx, got so much information just reading everything you all share, so thank you .
im just a newbie here, Iâm PPMS, just at end of June dx after years of the Neuro saying hmm we are not sure. Iâm 38 and part of me was relieved to know what we were dealing with. So I was kind of the opposite side of the coin to you I was Ill and we needed answers and they werenât forthcoming for a long time, but like you I have been getting worse but at least we can reasearch the best ways to deal with whatever symptoms your struggling with the most.
I hope the neurologist gives you some good help and advice next week I hope you get directed to your MS nurse etc, I found it important to get as much information and support as possible, but every area differs.
I was diagnosed about 15 months ago and was told it would probably be a year before they could say if it was PPMS or RRMS but as I was in my late 40âs it was probably PPMS. I am not on any medication and there has been some decline in my ability to walk any distance. I see my Neuro later this week so I will see what she has to say. I agree that this forum is a great source of information and if you need any questions answered this is the place to come.
Thanks Polly Would have been dx a lot earlier if I had persiverd was seeing a neurologist over 10 years ago ,but was stupid and thought I was wasting time being a hypocondriac, the symtoms were so random just did,nt tell him. But have a new neuro now so much nicer, can talk to him and I had the tests this time . No fool like an old fool.
Thanks Jackie I,m 55 an like you walk short distances everything is a challenge, and you have to find another way round to get things done . I do love a challange .I,m on avonex injections weekly not nice .
Hi Eve and welcome to the gang. Iâm 45 and was dx 16 months ago after a long spell of difficulties. Like you Iâve probably had it for many years but felt like a hypochondriac as my symptoms were so random, believe me, there are so many of us who felt that way. This forum has helped me so much and I hope you return regularly as the people here are really friendly and supportive.
Good luck with your Neuro visit and along with asking for referral to an MS nurse, ask for an Occupational Therapist to visit you as well. Theyâre fantastic, they come to your home and have lots of equipment and ideas to make life easier and safer for you. They donât make you feel like a scrounger or critique your house, just ask anyone here, theyâre a huge help. Please let us know how you get on.
Iâm another one who had various symptoms for years⌠was fobbed off with anxiety & hyperchondria⌠then finally dx with MS in 2008. Was told it was PPMS a year or so later.
This is the very best place to be for advice, support and most importantly friendship⌠with people who really understand.
It takes ages to get your head round it⌠so take it slowly⌠the best thing you can do is take it âone day at a timeâ.
Very glad you have joined us and hope the neuro appointment goes well. Please come back and tell us how it went.
Sorry to hear about your diagnosis but glad youâre finding this forum so helpfulâŚyou have definitley come to the right place
I was diagnosed last august. Referred to neuro with chronc headaches/migraine, never thought about MS. I have psoritaic arthritis, so I just related my symptoms to that condiion. I joke to people that I came away from neuro still with the headaches but MS to go with itâŚlucky me Actually, I take topiramte which does help the headaches. Humour is my way of coping, if I stop laughing Iâm a goner
Itâs very frustrating to be in limbo with your diagnosis. It actually matters in order to be prepared for both the immediate and distant future. Make a list of questions for your neurologist-use this web site to help. An hour or so having a look through the symtoms and consequences could help formulate pertinent questions specific to you.
and to Nina,Cath,Pat,Noreen,Steve,Pam,( glad you had a nice time by the sea ) hello
Thank you all for a nice welcome. Well seeing the neuro next week , turns out , to be next week got it wrong . My memory was never that great to start with so I write all appointments on the callendar , now it looks like I need help with a callendar . Have a cold just now and been floored with it , could hardly walk at one stage is that MS or the Avonex causing such a bad reaction to a cold . Been taking paracetamol and ibuprofen on top of the rest just to try and walk to the toilet . In the last 5 years I have went from taking nothing , no tablets medicines nothing , to now rattling when I walk , lurch an drag would be a better discription . To - day enjoying the lovely aftertnoon on the couch by the open door watching the dog in the garden , nice , when along came the cat and set a, live , slightly , mauled , bird in front of him . So stuck on the couch, no chance of fast movement , biscuit here biscuit only option , he looks up at me from the wee bird twitterig about in front of him , he,s considering good , he reachs down to get the bird and swallows it, on his way in for his biscuit . Horrified ,an I swear that cat was smirking . Sorry for rambling on .
Oh my goodness Eve what a terrible thing! But thatâs a catâs nature for you. (Donât get me wrong⌠I love cats).
A cold will make your MS symptoms terrible Eve.
Our immune systems are hyperactive (thatâs the reason why some of us never get viruses at all) because the immune system seeâs the MS damage as a foreign body⌠so when something else comes along, like a cold virus, itâs really too much for the immune system.
Oh thatâs awful, although its natural for a cat, but I hate it when I see one animal hurting another.
My son has a pug and also a cat, and they both get on with one another, so much so, that a while ago the cat brought a mouse into the garden (already dead) he dropped it, and the dog swallowed it down!! So glad I wasnât there at the time.
Unfortunately, ms really plays up when you have even a minor cold, so listen to your body and rest as much as you can. Hope you feel better soon.
love the description of the cat smirking. They do, donât they?
We have two 16 yr old moggies, siblings. Thankfully they have slowed down a bit and they seem to have put the whole âif it flutters or scuttles then I must chase it, play with it and then dismember itâ thing behind them. They used to be terrors though. But we still love them, donât we?
Our two are both a great comfort to me, now I spend more time sitting on my own at home.