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either / or

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 .

Kind regards Eve

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Hi Eve hope all goes well with DX thats the best I can say other than hello and welcome and keep smiling it confuses the enemy.

DON

Hi Eve,

im just a newbie here, I’m PPMS, just at end of June dx after years of the Neuro saying hmm we are not sure. I’m 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 weren’t 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.

Let us know how next week goes?

Take care

Polly xxx

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Thanks Don, I will a good sense of humor will help everytime. Just laugh as I go lamely along

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Hi Eve,

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 40’s 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.

Good luck with the neurologist next week.

regards

Jackie

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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.

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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 .

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Hi Eve

good luck next week when you see your neuro, hope you get some answers!

fingers crossed for you,let us know how you get on,

will be thinking of you,

nina x

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Hi Eve and welcome to the gang. I’m 45 and was dx 16 months ago after a long spell of difficulties. Like you I’ve 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. They’re fantastic, they come to your home and have lots of equipment and ideas to make life easier and safer for you. They don’t make you feel like a scrounger or critique your house, just ask anyone here, they’re a huge help. Please let us know how you get on.

Cath xx

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Hi Eve and welcome to the gang!

I’m 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 ‘one day at a time’.

Very glad you have joined us and hope the neuro appointment goes well. Please come back and tell us how it went.

TTFN,

Pat xx

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Hello Eve and welcome

Sorry to hear about your diagnosis but glad you’re finding this forum so helpful…you 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 it…lucky me Actually, I take topiramte which does help the headaches. Humour is my way of coping, if I stop laughing I’m a goner

Good luck wih your appointment next week.

Noreen x

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Hello Eve,

It’s 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.

This forum is also a real help and comfort.

Best wishes, Steve.

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Hi Eve

Sorry for being late replying, just got back from a lovely few days by the sea, but just to say welcome to our “gang” of lovely friendly people.

Look forward to seeing you on the forum.

Pam x

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Hello all

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 .

Eve

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Hi and welcome ,its great on here,lovely people…poor little bird bet you were horrified ,when your dog swallowed it…

J x

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Oh my goodness Eve what a terrible thing! But that’s a cat’s nature for you. (Don’t get me wrong… I love cats).

A cold will make your MS symptoms terrible Eve.

Our immune systems are hyperactive (that’s the reason why some of us never get viruses at all) because the immune system see’s the MS damage as a foreign body… so when something else comes along, like a cold virus, it’s really too much for the immune system.

Make sure you get lots of rest.

Put a collar with bell on that cat!

Take care and hope you’re feeling better soon,

Pat xx

Hi Eve

Oh that’s 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 wasn’t 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.

Pam x

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Hi Eve

love the description of the cat smirking. They do, don’t they?

We have two 16 yr old moggies, siblings. Thankfully they have slowed down a bit and they seem to have put the whole ‘if it flutters or scuttles then I must chase it, play with it and then dismember it’ thing behind them. They used to be terrors though. But we still love them, don’t we?

Our two are both a great comfort to me, now I spend more time sitting on my own at home.

Kev x

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Oh I wish I could have a cat.

Most sheltered schemes won’t allow them. It’s such a shame as I would love the company & they are quite easy to look after.

(My goldfish are giving me dirty looks as I write this).

Pat xx

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