Hi guys, for some reason my return button does not want to work so please forgive this odd looking post. I have watched and read from afar so thought I would finally say hello in person. I woke up one morning 5 months ago with MS symptoms and they have been here ever since, I had loads of tests a couple of MRI’s which showed a patch of demylitation on my spine and a couple of ‘spots’ on my brain. I had my nuro appointment and basically as I had symptoms every day diagnosed me with clinically isolated syndrome, and gave me a course of steriods, they unfortunately made no difference and after a meeting with my MS nurse last week she told me that as I still have symptoms each day it looked like I had PPMS and that was what my nuro would confirm next year. I am doing the ‘putting on a brave face’ and my moto is I have MS, MS does not have me, but still hit the lows when I can no longer do normal things like give my children a carry. Anyway thats me in a nut shell, just wanted to say hi, and if anyone has any advice re food/supplements anything to ease symptoms please can you let me know. Thanks Ruth x
Hi Ruth and a big welcome to the gang…
It’s so hard at first hon… we all know how it is. You try to put on a brave face but it’s not always easy… and what an odd creature you would be if you didn’t feel on an emotional rollercoaster right now eh?
Take it one day at a time. That’s my motto. I don’t go so much for the ‘I have MS but MS doesn’t have me’ simply because sometimes MS DOES have me!!! Esp for us PPMSers and SPMSers!!!
Try to just think of today and what you CAN do today… and hey your kids need all your love and protection but it won’t hurt them one tiny bit if you can’t carry them.
Suggest you try Vit D3 in very high dose. Lots of neuro’s are now recommending this for MS. You can’t get it on NHS as they won’t prescribe in high dose, so go on Amazon and put in ‘Vit D3’ and buy the one from Healthy Origins… 5,000 iu (that’s International Units)… it’s about a tenner for almost a year’s worth.
Read the posts on here about other drugs that might help… take a look at the long one about LDN.
You return button not working is a problem for some people on here right now… but I think that people using Internet Explorer have the problem. Try using Google Chrome or Firefox and see if it helps.
You have come to the right place Ruth… we are a lovely little gang on here and are the experts on PPMS… trust me, we know more than your GP or neuro put together.
So welcome and come on here and talk about anything at all… nothing is taboo… and we are all here for each other.
Take care and see you again soon,
Hi Ruth, Just wanted to say a big welcome…I’d like to offer advise but I think Pat has covered it all …I can only agree with all she has said!! Like you I read all the posts for months before I took the plunge! Now I don’t know how I managed …the support is second to none. Hope to see you back again soon, Wishing you the very best, Nina x
I’m a lot like that, I’ve been told def MS but the type isn’t clear yet, but likely PPMS as I’ve certainly not got any better and like you, I have a year to wait for the 2nd appointment. I was told this at the beginning of July and I get your ethos. I tried to be the sane but have had a few wobbles!
I think it takes a LONG time to really accept it, I still have little upsets about it even now but luckily they usually pass me by fairly quickly. Yes, I still hope it’ll get better, I don’t think you cpuld really get by without that tiny glimmer of hope BUT it kind of makes me laugh that people still view it as bravery… I feel a complete fraud when people say “you’re an inspiration”, no I’m not, I literally can not curl up and cry as it’s pointless so yes, like you, I put on a brave face
Right, luckily I’m not too busy at work so I’ll list:
Naturally, D3 is a must but not proven. My neuro told me 1,000 - 2,000 units a day but some people take far higher but it can be overdone so if you’re going to take higher, you will need blood tests to check you levels.
B12 - low levels can cause symptoms that mimic MS so take a good B complex (again, you surgery may have already checked yours, mine checked mine when I first complained of trouble walking!)
Cranberry and/or D Mannose if you have any bladder issues, I don’t know but suspicious I retain so try to do what I can to avoid infections
LDN (low dose naltrexone) I took this after reading about it hear and then looking at the LDN trust website, in the ansence of any real actual treatment, this seemed the only option and having read up, it’s low impact, minimal side effect and basically a relatively kind type of drug. Unless your GP will prescribe, you may need to get a private prescription but not hartd to do on the net and not too expensive
OK, that’s most of my pills and potions as I’m just switching from one to another for spasticity. I also take amitriptyline to help me sleep (stop twitches).
As for the single, I down-loaded google chrome and the problem disappeared.
OK, that’s a truly epic post, so I’ll stop there but welcome - there’s always support here when you need it
Ha ha ha, Pat had given you all the important bits while I was dawdling over my response…
Yes, quiet at work but still had to minimise when people walk past
You have been given some good advice, but I just wanted to say welcome to our gang, and take one day at a time, hope to see you again on the forum.
Hi Ruth, Sorry about your probable dx - it does take a while to get your head round it, it doesn’t happen overnight! Be kind to yourself and lean on everyone who will support you. It will help to get through. Try not to worry about your children as they will adapt, children usually cope really well with change, they are flexible! I hope Pat doesn’t mind but wanted to mention something about the vit D3. You do need to get your levels checked fairly regularly by a simple blood test at your surgery. One of our number ended up with a toxic level by taking too much vit D3 which you obviously don’t want! It is definitely worth taking and I take 5000 ius every other day but did have it checked and a daily dose was pushing my levels too high! I hope this makes sense! Good luck and take everything one day at a time. It helps! Teresa xx
Hi Ruth. Welcome to the forum, it’s a fantastic resource with friendly support from people who have had and are experiencing everything bothering you. The only other thing I’d advise is referring yourself to the Occupational therapy team. I don’t know if you’d need your GP to refer you but in Cumbria you can do it yourself and they’ll come to your home and assess you and get you loads of useful gadgets to help you manage all sorts of things. Makes life much easier.
Also your emotions will be up and down. Allow yourself time to grieve as this is a loss of your old life and plans for the future. Let family and friends help with jobs etc as they like to feel they’re able to help you and any assistance benefits you and your family.
If you feel you need help please see your GP ASAP, it’s not unusual to get depression with ms, many of us need an anti depressant, there’s no shame in that. Also make sure you rest when you can and don’t beat yourself up when you can’t manage things like carrying your children, they’ll get used to new things as long as you remain consistent, don’t overdo things on good days or you’ll pay for it and have more bad ones.
Please keep in touch and as the others have said and you may have realised by reading other posts, there’s nothing you can ask that will shock us and if we can’t help, we might know someone who can. Take care of yourself. Sorry for the essay.
Thank you Sonia and Teresa for remembering that we should have Vit D3 levels tested… glad you picked up on it… it’s important.
Hi guys, thank you for your lovely welcome, I am using the works browser so can’t download another one, so sorry about the ‘look’ of my posts. Thanks also for the information, I have been taking vitd for a week and can’t believe the difference it has made to legs, my arms still ache like mad and all the other symptoms are there but any improvement is a bonus, I will definately look into LDN, my vit b was checked a couple of months ago and as noone has told me otherwise I am niavely presuming it is ok. I am already on anti deprssants as I had a bad break up with my ex husband 3.5 years ago, he unfortunately is a selfish idiot who moved into the house next door to me with the woman he was having an affair with whilst I was pg with our son and subsequently left me for, we had been together for 16 years and have 2 children, but today he has added to my emotional problems, my 8 year old daughter went next door last night to say good night to him and came back and said ‘Mam you have a peg leg’ she hasnt got a clue what a peg leg is so I explained it was not nice to call people names and asked where she had heard it from, that caused the mother of all tantrums resulting in her saying she was not going to move off the settee and go to bed as I have MS and can’t lift her, she was shocked when I pulled her up off the settee, a bit like me really lol. But she then started to lie and it got out of hand and she told me she didnt want to live with me anymore etc etc, when things had calmed down a little I asked where she had heard ‘peg leg’ from and she said she didnt know but it was definately not next door, I at had never mentioned or suggested her Dad or his girlfriend had said that to her but it did confirm thats where it came from. How am I meant to get any respect from her when he thinks its ok to call me names in front of her about me, and what right does have to call me a peg leg, I dont limp I just waddle/shuffle slowley instead of walking, sorry needed to rant, its either that or cry and I’m at work so best go with ranting xx
Aw Ruth, don’t worry sweetie, I bet your daughter is only behaving like this because she’s upset/worried about you and doesn’t understand. I’m sure there is something on the site about explaining to children, I think the MS society do a factsheet along those lines (like you, I’m at work!) but it might be worth ringing the helpline for advice if you can’t find it Rotten of your ex or his girlfriend to say things in front of your daughter.
Kids will feel it that’s for sure, I’m very fortunate that my step-daughter is now in her early 20’s but I know she’s been really worried about me and for that I feel awful! She follows the MS society on Facebook and twitter so has a far better understanding of ppms than most of my family & friends… her comment the first time we saw her after my Dx was “you might want to sit down… Mum asked after you and said she’s sorry to hear about it” - and yes, that was a shock, her Mum has barely said anything nice about me in 15 years, and she’s married to someome else, I didn’t exactly steal him away!
Take care Ruth, it will get easier
Nice to meet you Ruth, this is the place for help and support
Ruth your ex is so inconsiderate moving in next door with his new woman. I couldn’t bear to even stay on the same continent as mine. It’s no wonder you’re on anti depressants, I’d have been on death row. I agree, your daughter’s bound to be stressed about your health issues, it’s amazing just how astute they are. It doesn’t mean she can get away with murder though. Take care.
How my ex or his gf is still alive is a bloody miracle believe me the stunts they pull to make my life horrible you would honestly think I was the one to cause the marriage separation ! My daughter seems to understand and accept ms I read her the mummy makes the best cakes book when I told her what I had and she understood it and read it to my bf to make sure he understood it and then took it to show her dad. The problem is she blames me for the breakup and always has (I won’t tell her the truth as it will hurt her) so her attitude towards me has been hard for the past 3+ years she’s great for dad, but then they have a 'sweetie ’ car, can have sweets and chocolate whenever they are with them and that’s 40% of the time there’s no rules and they basically get what they want (out of guilt I suspect) and they reguarly slag me off and call me names like ‘peg leg’! It’s tough but on a lighter note when my son asked for a carry the other day and I said I couldn’t as mam us ms makes her arms poorly he said but mammy you don’t make a mess you tidy up :))) x
Aww bless him. I really feel for you. My ex never did right by my daughter either (he also had an affair while I was pregnant, but I threw him out for it). He only saw her and paid maintenance when it suited him, vanished for 6 years etc, and I was the bad beggar for years as I chucked him out, and set rules, and was the disciplinarian, need I go on? But now she’s older she’s realised that he is selfish and only speaks to her when it suits him and won’t even call him dad. Add they get older they realise. Small children can’t understand, they are only able to recognize good and bad from what makes them happy or sad. It’s their immaturity so don’t let it get to you, they don’t know any better. Your ex should not be slagging you off in front of her but as she matures she’ll understand how wrong that is.
Keep your chin up, you’ve got enough on your plate without that.
I’ll say it again Ruth and I firmly believe it - your daughter will one day see the slagging off for what it is!
My step-daughter moved in with us when she was 13 - when she telephoned her Mum and said she wasn’t coming home, her first reason (she had a list) was that she found her Mum’s continual bitching about us unbearable. This followed years of arguements/court etc. etc. and me kicking my husband under the table if her ever even started to say anything bad about her mother.
It’s always tough with break-ups but carry on being a proper Mum (i.e. not a push over!) and your girl will one day understand and thank you for it
Hi Ruth and welcome. I recomed the I have rather that it has me atitude. I was given that advice twenty years ago annd still live by it. MS IS A voyage of discovery enjoy it
Hi Ruth, Cath and Sonia are right …she will understand when she is a little bit older. He sounds a real b*****d , so cruel but what goes around comes around…he’ll get his comeuppance one day. Keep your chin up…you deserve so much better than him. Take good care of yourself, Nina x
Thanks again, I’ve had another tough weekend with my daughter asking what did you do to make Daddy leave, and if you stop shouting at him, he might come back (I havent shouted at him for ages and he left 3.5 years ago! ) I feel so sorry for her I just want to protect her, which is why I will never tell her that he had an affair, with the woman my daughter loves and trusts, until she is older. I have been with my bf for 10 months and he is amazing, especially when you think I havent had a symptom free day for 6 of those months, I feel like I am a very lucky girl to have found him and as for the ex, the battles there will always continue especially as I am going to go back to court to try and change the court order so I dont have to sell till the kids are 18… Anyway hope you are all having a 'good day ’ xx
It is hard Ruth. My daughter has been treated terribly by her dad. You’d not believe me if I told you half of it, but he regularly vanishes with no trace, breaks her heart and returns to do it again and I’m not allowed to do anything according to my solicitor even though he’s kept up no correspondence, maintenance or terms from our divorce. I expected him to do nothing but help her.
Long story but she’s now 16 and neither trusts or respects him. I avoided answering any questions until she was 13 and being counselled as she felt he left because of her. He started contacting her about 8 months ago because his wife left him, but she realizes now that I’m not the bad beggar, I’m the only constant in her life and she’s grateful for me not slagging him off.
Your daughter will understand but it’s a long wait. Just love her but please don’t be frightened of getting help for her if she needs it later. I wish I’d recognised the signs earlier. Good luck for your court case, he’s obviously quite insensitive and spiteful and won’t make it easy. Make sure he does right by you and your children, I wish I’d been able to but you can’t sue the invisible.