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Is MS Life Limiting Illness?

(100 Posts)
MrFranklyShankly Sat 17-Sep-11 09:36:51

HI everyone,

Have spent ages looking for somewhere to ask these questions, didn't know where to post them so maybe here might be the best place? currently going through tests to see if I have MS, don't know a whole lot about it, started having some of the symton's about a year ago, of course didn't think it was MS then, just passed them off as one off things, like the numbness in my face that would come and go, the weakness in my arms and hands that would come and go, but over the last 3 months these things have been more consistent.....loss of balance is getting worse, other things like short term memory is quiet bad and a constant feeling of my body shaking from the inside is driving me around the twist.......so GP doing tests, tells me it could take up to a year for a definite diagnosis? Is this normal??? I'm very scared as I have no idea what to expect or whats ahead of me, my DH is also afraid (but trying not to show it) haven't really told anyone like friends or family, too scared to say it out loud.....just looking for some advice and reassurance really of whats ahead or what to expect with tests?

Some weeks are fine, I'm back to me again, but then if I have any stress at all or have any form of tiredness (which is run of the mill with 2 small children) it hits me and stays for a few weeks, the weakness, dizziness, and numbness down one or both sides...I'm just so confused at the moment and so up and down......today's a bad day.......

belledechocchipcookie Wed 26-Oct-11 12:21:02

I've not been on the forums. My last hospital appointment was very scary though. I'd just got out of a relapse and was able to see properly. In the waiting room were a lot of people in wheelchairs, unable to do anything for themselves. It made me look at my life properly. I left my job and started writing, I've been in remission ever since and barely have any symptoms. I know the MS society have branches all over the place, there's one here. I may venture in at some point. It is hard, it helps to go one day at a time.

You can get medication for the fatigue Jux, amantadine or provigil. They are anphetamine based. I did try amantadine, it did work but gave me crazy dreams.

Jux Wed 26-Oct-11 12:49:00

I took amantidine years ago, but got onto the top dose quickly and needed something stronger. My consultant at the time was a vile man who wouldn't even look at me, let alone talk to me. He addressed all his remarks and questions to dh (who was being so far off brilliant at the time that we were in line for divorce). In the end, I stopped taking dh with me, so the bastard consultant didn't speak to me at all!!!! I never went back. We moved a year or so later and my consultant here is lovely.

I take provigil now, but have an under active thyroid too, so it all gets mixed up and we are messing about with doses between provigil and thyroxin until we get the mixture right! It'll be fine, just a little more patience required.

Don't let that worry you, Frankly or Chair. My first attack was years ago and I've only got like this in the last few - age catching up with me! As I said earlier, I've done tons of stuff despite ms, even since that first attack (though looking back I think I had my real first attacks in my teens, which means that I've done even more wild and wonderful things with ms running in the background).

belledechocchipcookie Wed 26-Oct-11 13:16:00

God Jux! shock That's terrible treatment.

Jux Thu 27-Oct-11 00:50:42

He was an exception, belle. Most consultants seem to be really nice people.

What annoyed me most in the end was that I wrote to the hospital telling htem I wasn't going to see him again and exactly why and detailed the whole of my 10 minute audience with him, but they kept sending me letters giving me further appts and then more letters telling me I'd missed them and giving me another etc etc etc. I must have missed 5 appointments at least in the two years following.

Just to reassure people: neurologists are not usually like that!

MrFranklyShankly Mon 31-Oct-11 17:42:24

Hi girls,

Happy Halloween!! Hi Chair, glad you posted, sorry to hear about your DH, and your so right, even though I haven't had any diagnosis yet the uncertainty of what might be ahead of me is maybe worse than what I will find out....the things I have conjured up in my head are probably much worse than what this will probably turn out to be.........and I totally agree with you,I went to the MS society website, just to check out if anyone else was going through the same as me and it scared the absolute life out of me....so now I just stick to finding out little bits at a time! I hope everything turns out okay for your and your DH and wish you all the best.....and do keep lurking as you put it! Sometimes its just good to know there is somewhere you can go for a a bit of anonymous support! Can I ask you about your DH symptoms? What made him look into it? if you don't mind me asking you, you can PM me if that's okay?

Well the saga continues, I've found out that my MRI hasn't produce enough results, apparently it was very distorted (could that have been my fault, I kept as still as I could?) so it looks like I'm going to have to go through it again? Very pee'd off to say the least.......the old legs arent great this weather, not doing what I'd like them to do, and sooooooooooooooooooooooooo stiff, feel like I'm dredging through mud, but things have settled down a bit, sleeping better at night (a bit too well, DH and kids have to bang drums to get me wakend) and the buzzing is still there, just getting better at ignoring it.......just really want to get an answer now.......would be a relief to hear what this is that is invading my body.....anyway....rant over......hope everyone is having a nice Halloween........

MrF

MrFranklyShankly Mon 31-Oct-11 17:50:34

Sorry guys, didnt even see page 3 until now LOL, was still on page 2 when I replied! God Jux that is awful treatment..........on my first pregnancy with DD my consultant was a bit like that.......he wouldn't even look at me, spoke about me and my 'unborn fetus' like we were just a stats report, git......so there's always one somewhere, just a pity you had to get him......I hear the neuro that I will (eventually!) be seeing is lovely......Yeah Belle, best keeping away from the forums.....I've met 3 lovely ladies recently too that have MS, one has had it now for 15years and she said its only really in the last 2 years that she's been needing a walking cane to walk with so things like that give you hope, my gp keeps telling me too that the medicine has come on leaps and bounds for MS so there is so much hope (or so I keep telling myself in the interval of knowing whats going on in this crazy body of mine!)

Frankly

Jux Tue 01-Nov-11 08:24:39

What a *&^&. Yes, that's exactly how my consultant was. Evil gits aren't they? grin

If you are diagnosed beware of 'cures'. When I was dx, everyone popped out of the woodwork talking about this or that brilliant cure they knew of; most of which were vastly expensive, required many sessions and huge financial outlay. Do not be beguiled by any of it.

Even my husband, only a couple of years ago, wanted me to go off somewhere to get some goat serum injected into me grin The latest thing is a cure which will cost £8K but is guaranteed to work. 100% success rate. You have to question that sort of thing.

Jux Wed 02-Nov-11 10:41:30

I want to tell you about my friend who has ms.

She was dx in her late teens/early 20s. She was a science teacher in secondary school (now retired, not through ill-health, but normal age-thing before it was put up).

She and her husband are gad-abouts. She's never HERE!!!!! They're always off somewhere in their big motorhome. This summer they went all round Europe for 6weeks. Last year it was America.

They've had 4 children and she spends a lot of time jetting about between here and 4 different areas in the UK helping with the grand kids. the grand kids often come to stay, some are only toddlers. She was saying last week that one of them (3 yo) is a bit heavy for her to carry now.....

She and her dh go out 3 evenings a week, to dinner, to socials blah blah blah. They entertain, barbecues, parties, dinner.

Pretty normal life. Like a lot of people in their 60s who've been able to retire on good pensions.

Yet, she has had to use sticks for walking most of her life. Now, if she goes out, she has to use a motorised chair. So she's not entirely normal, and has been affected by ms, but her attitude, and also importantly her dh's, is Do It.

I know another woman whose attitude is Don't Do It. Her husband is the same. He is embarrassed to be seen out with her, so he isn't. She goes almost nowhere. He even goes on holiday without her.

How limiting you allow ill-health to be is not just determined by the condition you have, but by your attitude to life.

MrFranklyShankly Fri 18-Nov-11 11:31:00

Hi ladies, how are you all keeping. Well had my 2nd MRI at the start of the week, was pretty much the same as the first, noisey, cold, at one point I felt like shouting I'm a celebrity get me out of here!!! but got through it and getting results next week, have my appointment to see the consultant in the hospital to go over the results of the scan....so at last I'm getting somewhere nearer finding out whats going on...feeling a bit nervous now, do I really want to know really, I know the sooner I find out the sooner I can do something about it....if theres anything to do something about...so I'm going to adopt your attitude Jux and belle, one day at a time and we'll see what happens, doesnt mean life has to stop, it might just be a bit different....will let you know how I get on, thanks for the words of support, they really are appreciated girls.

chat soon

Frankly

Jux Fri 18-Nov-11 21:37:26

Good luck Frankly. I felt overwhelming relief when I finally got a dx; at last, all those people who had been treating me as a lazy-good-for-nothing waster were wrong. Well, that was one thing but definitely secondary to the fact that I had spent so long just not knowing what the hell was wrong with me, and now I did!

My gp told me her best mate had felt exactly the same when she was dx.

belledechocchipcookie Fri 18-Nov-11 21:55:51

I was relieved. I'd felt so unwell for years and kept going back to the GP with various symptoms that I'd started to feel as though I was a hypochondriac. I really feel for people who have ME/CFS, they medics like to see evidence of an illness before they take the patients seriously. It's depressing when you're feeling so crap and you don't know why.

Jux Sat 19-Nov-11 18:30:47

All my life I'd been a mass of minor ailments; most of the time I could just ignore them or work around them. I remember standing at the back in class aged about 15 bent from the hip over my desk because my knees had locked and I couldn't sit!

Someone told me today that there's a blood test for ME now.

jellymaker Sat 19-Nov-11 22:53:31

Hello mums netters I just picked up this thread . I'm fairly new to this but was looking for other parents with m. S. I've been on the road with this disease 8 years now, and am going for my second MRI this week. Absolutely terrified as I had a panic attack last time. It certainly makes for a different life than you thought you would have but I guess it's what you make it. My kids keep me from going but I was wondering if anyone has told their children or not. Mine are 7 and 4. We don't talk to them about it but I'm wondering wether we will when they are old enough to understand.

ihearthuckabees Mon 21-Nov-11 14:36:56

Hi everyone,

Hope it's ok for me to come back into the thread.

Frankly, good luck with the consultant. i hope your results clarify things for you. I would second what the others have said about a clear diagnosis being a good thing, even if it's bad news, because then you know what you're dealing with. For me, that's a positive thing, because then I can tackle it head on. I have been working on the 'Do it' basis, like Jux's friend, and so far, have managed ok.

My diagnosis came this summer, and I've now started on beta-interferon treatment, which is a bit of a bind, and I probably feel a bit worse at the moment, although prior to starting it my symptoms had improved from the horrible dizziness and weaknes I had over the summer, so I'm putting it down to my body adapting to the drug.

Jelly, my DS is 9, and I've told him in simple terms what I've got, but tried to reassure him that things won't change all that much. He seems happy with things and hasn't really asked too many questionsa, although he did ask if I would die, which is apparently the first thing that kids usually say (the second being, 'will i get it?'). I got a great little booklet from the hospital for him to read produced by the MS Trust - might be worth asking your nurse for a copy. He has repeated some of the things he's read, like the fact that I will sometimes feel better than at other times etc so he seems to have got a bit of a grasp of things.

belledechocchipcookie Mon 21-Nov-11 16:31:29

My son's 12, the first thing he asked was would I die? I spent time explaining what it was and how the TV programmes always portrayed it as being worse then it really is because they dramatise things a lot. I have relapsing remissive so I explained that it goes away and comes back. I've told a few members of my family, not my mother though as she'll panic and won't really understand that it's actually OK at the moment. I had to take ds with me to the hospital when I was unwell last year, he kept the nurses amused hmm

MrFranklyShankly Wed 23-Nov-11 20:22:14

Hi again guys, have to say this feels like the longest week ever.......getting results on Tuesday......trying not to build myself up too much over it, as I know they could turn to me and tell me that they need to do more tests, which in a bizarre way would be worse than actually a clear answer as to what it is....I just cant take much more waiting for tests and results.......nice to hear from you again huckabees, and hi to Jellymaker, so sorry to hear you have this awful thing, my eyes have really been opened to all of this over the last few months, before this I really hadn't a clue to what MS was.....such was my ignorance....and like that Jelly I have been thinking what do I tell my children, mine are around the same age as your, 3 & 6, my 6 year old is fairly clued in to whats going on around her, and has obviously heard me and my Dh talking about things, and has already asked me if I'm sick and will I be okay.....I did see on the MS Society website a booklet how to explain to your children......sounds like you're Ds is a little star Belle, My girls are great just for taking my mind of stuff, well when we're not fighting about tidying up that is!!!

anyway, I'll let ye know what my outcome is on Tuesday, if there is one, thanks again everyone for the words of support, they really are appreciated.

PS: Huckabees I haven't forgotten about that book, might get you to recommend it to me now if you don't mind. Thanks

Frankly

ihearthuckabees Wed 23-Nov-11 20:51:06

Hi Frankly - keep your chin up. I remember waiting for my results (the consultant went off on holiday after my scan, so it seemed like forever). It was really tough, but much better once I knew for sure, even though it was a positive diagnosis.

Here is the book: remember not to get too bogged down with the details - there are LOTS, and many conflict with each other, but the author is said to be an inspiration to many people.

Managing Multiple Sclerosis Naturally: A self help guide to living with MS by Judy Graham.

x

belledechocchipcookie Wed 23-Nov-11 21:09:28

Whatever life throws at you, you can handle it. smile Remember that you don't really need a lumbar puncture, there's no point in putting yourself through that. Take each day as it comes.

MrFranklyShankly Thu 24-Nov-11 13:30:20

Thanks Huckabees and Belle, trying to remind myself I'm stronger than I think...although at the moment feel like I'm going to have a breakdown just thinking about it.......feel like I'm trying to keep everything together, get on with normal daily living, which is hard when all you want to do is pull the duvet over your head and sleep forever. thanks for the rec on the book huck ;-)

MrFranklyShankly Wed 30-Nov-11 21:00:11

Hi ladies, well got my results from my MRI yesterday, and the good news is they were clear, they said nothing showing up in my brain scan out of the ordinary and the only thing they found on my spinal scan was that I have 2 protruding discs in my neck and my back! So they think this is the root of all my problems........I'm extremely relieved to say the least, they said that they feel I do not need to have a LP done as they don't believe there is anything other than this causing my symptoms so awaiting for a referral to a physio now, still have all my numbness, tingling, weakness, twitching, dizziness and constant vibrating when I'm sitting still (which they tell me is all caused by the nerves being pinched in my neck and back) I just hope this is really the case and they aren't just passing everything off on this one thing.....so now what do ye think? Does this sound likely...........although I'm totally relieved, my anxiety levels were sky high at the w/end with worry so I really want to believe this of course.........but what do ye think??? Hope ye are all keeping well by the way.........and thanks so much once again for all the support

Frankly

Jux Wed 30-Nov-11 22:57:25

I have no medical expertise, but it sounds reasonable to me. Pinched nerves can certainly do all those things. If they've found nothing in the scan then I would assume there's nothing there, you've had 2 now haven't you? Plenty of opportunity to make sure they see everything.

Congratulations! Chocolate all round!!

Sudaname Thu 01-Dec-11 09:11:39

Congratulations Frankie - my dear late brother ( I absolutely hasten to add the 'late' was absolutely nothing to do with that ) had a similiar problem in his neck and blood supply was being restricted to his brain etc > passing out > numbness etc. He had to have an op called a spinal laminectomy to correct this and while it was no picnic -he had to lie flat in hospital for a week or so I believe from memory - it was successful. You obviously may not neccesarily have to have this but just pointing out they can usually rectify these skeletal related thingy wotsits type problems (not a techy me I'm afraid grin).

The reason l have come onto this thread unfortunately on a more serious note is that my son aged 33 - fit as a flea/non smoker/light social drinker/good diet/ ex county champion cross country runner - has rang me last night with some 'news'. He had a scan on his neck a month or so ago because of numb hands and stiff necks and they have told him apparently they think he has MS. He said they wont no more till January.

I too need a good kicking slapped wrist - straight onto Google with tears still running down face as just come off phone - but still managed to see enough to picture my lovely son a complete shell in a wheelchair in no time at all. angry shock sad blush

I am going to see him on Saturday me and DH are staying over nearby - he lives other end of country - and my two little DGDs and l am dreading it. l am just gonna burst into tears and make him feel worse and be no use to anyone - how do l pull myself together - l need someone to tell me he will be alright but l know no-one can sad. As many of you have said its the 'not knowing' that is unbearable.

ihearthuckabees Thu 01-Dec-11 18:20:56

Frankly - great news, so to speak. I hope they can get your neck problems under control and it relieves the symptoms. Fingers crossed.

Sudaname, try not to 'react'. Give yourself time to let things sink in, and read back on this thread and you'll see how many people are leading normal or almost normal lives with MS. The thing that is helping me is the knowledge that there is so much good work and research going on regarding MS. I feel optimistic that treatments will improve and that people like me (reasonably well) will be able to keep a good quality of life (look what's happened with conditions like HIV in the last 10 years).

There is not much to be gained from worrying about what the future holds when there's life to live in the present. (I know that sounds a bit glib, but it is important to focus on what is ok rather than what isn't otherwise the 'what-ifs' can really get you down.)

Sudaname Thu 01-Dec-11 21:19:59

Iheart - thank you so much for your very uplifting post. You are right of course - all any of us have is now - only washing machines and such like have the luxury of a 5 year guarantee grin - so we need to take each day as it comes. I know l will get past this phase of shock and denial and 'no not my son' and realise he is still my son - the same wonderful person he was yesterday and more importantly he needs me to be strong (if l run round the room screaming as l feel like doing l'll be no use to man or beast! ) I have experience of this - my DGD has CF and people say to me - 'l couldnt cope with that - it would break my heart everytime l looked at her etc etc' - but you know in reality you dont do that. When l see my DGD l dont see a 'tragedy' or a child whose life expectancy is only 29 at best - l just see my beautiful DGD - she is 11 and there is much more to her than Cystic Fibrosis - she is enjoying her life now today and lives a near normal life. Thats not to say l dont have dark moments or wake up in the middle of the night having nightmares where l'm at hr funeral for example but l have accepted in the main that there is nothing l can do to change her situation.

I am struggling and feeling a little sorry for myself atm l suppose but l know l will at some point in the near future have a stern word with myself (that thing l do grin) and deal with this in the same way.

MrFranklyShankly Fri 02-Dec-11 11:39:32

Hi again ladies, Thanks Jux for the reassurance, your probably right, I've had 2 MRI's done now and if there was something there it should have shown up, but you know, theres always a bit of doubt in the back of your mind as to 'did they get it right'! So I'll run with the protruding disc now and see how I get on at the physio, see if that makes a difference, I hope it works as this constant vibrating feeling is driving me a bit cracked, especially at night.

Hi Sudaname, so sorry to hear about your son, my heart really goes out to you, as I know exactly what you mean. My parents have been to the end of their wits with worry over me this last few months, waiting for test and results, and the anixety it causes is unbelievable... like huck says focusing on the 'what if's can be soul destroying (I know only too well as I've been to the darkest corners of my own mind this last while with what ifs and its not nice)....and what I have learned from this is that although your son's diagnosis might not be what you all want, he can still have a happy life, just means a bit of a change and a good support from family and friends.....and on the other hand it might not be that at all (Hark at me, if only I would take my own advice, should have seen me on tuesday morn waiting for my results..a total mess) Something my dad said to me a few weeks ago 'whats for you wont pass you' and I thought you what your right, chin up and whatever it is will be okay....I really wish you and your son all the best Sud, let us know how he gets on and theres always support here, the girls on here are fantastic with information and support, I'd have been lost without them all over the last few months.

Frankly.

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