Hi, I’m very new to this as before 10 weeks ago I didn’t even think my daughter might have MS. She started with Optic Neuritis one day out of the blue. She went back and forth to the eye clinic. Nothing helped the pain, blurred vision, lost of field or colour change. She still came into work (We work together in my shop) Then she really felt unwell so we took some time off. She suddenly had awful pain in her legs and hasn’t been able to walk properly for nearly 3 weeks now. She was finaly admitted into hospital on Monday. She’s had a scan and it shows abnormalities and tomorrow is going to have a lumbar puncture. She’s a single Mum and has been living back at home with her son since her legs went funny. It’s all a bit sudden and daunting so I thought I’d say hi and see how others have found it all.
Liz, Welcome to the ‘forum’ - wish it was in different circumstances. l have had MS - the secondary progressive type - for 31yrs. l was 35 when it started. At first my GP would not tell me what he suspected - as - and this is very true - many of us have one ‘episode’ and then it goes and quite often never rears its ugly head again. And it was in his experience, that it was better not to say as the stress of knowing can exacerbate and make matters worse. Lovely, kind man - and l do understand his reasoning - now of course GP’s do have to tell patients straight away - medical ethics. lts a lot to take on - and the fear and uncertainty does not help our condition. The very first thing you must do is get your daughter to take vitamin d3 and vitamin b12 - just google vitamin d3 deficiency ms and the same with vitamin b12 deficiency ms. l take 10.000ius of d3 daily - and l get mine from amazon -healthy origins softgels 360 -10.000ius about £15 for a years supply. Chemists and health shops do not stock the high dose and at this competitive price.
The more you read up on MS - the better equipped you will be to help your daughter. lt is also important that her child has vitd3 as well - 1000ius is for small children. And take it yourself.
GP’s Neuros do not seem to know a great deal about MS - So you will have to become your own expert. Good neuros are very much a post-code lottery. l have never seen one that specialises in ms - and have never had access to a ms nurse - but they are around- just not in my area.
Even if her diagnosis is not MS - the vitamin d3 is still important.
You will get lots of support on this - and other forums - so don’t feel alone. Always someone ready to ‘listen’ to you and help.
Very sudden and very daunting, as you say. I am very sorry that you and your daughter are having such a horrid and worrying time at the moment. I hope that the doctors get to the bottom of her troubles very soon. You have a lot on your plate, with anxiety about your daughter, looking after your grandson (I expect) and trying to keep a business going in the meantime. I hope that you have friends and family who can share the burden. That would be my only suggestion to you - where help is offered, accept it gladly. I hope that you all reach calmer waters soon.
Spacejacket, I think it is worth pointing out, particularly to someone like the OP who is new to this world, that 10,000IUs of Vit D is higher - ten times higher - than the maximum level of supplementation currently recommended by the NHS to ‘normal’ people.
I know that there is mounting evididence that this max level is lower than it needs to be (I take more than that myself). But I think that a person should take formal medical advice before greatly exceeding the ‘official’ recommended daily max for supplementation which remains (I believe) 1000IU (25mcg).
Sorry to hear about your daughter. I hope you and your grandson are muddling through together okay. As Alison says, accept whatever help comes your way to ease the burden. Is your grandson very young or is he old enough to understand what is happening?
Hopefully things will calm down for your daughter very soon. I’m sure the hospital are doing their very best for her.
Hope everything improves and things are offered to aid this quickly.i would advise to get her vit d levels checked before you encourage vitamin D supplementation. Only I was taking a high dose then had bloods done three months ago which showed very high levels of vitamin D. Too high, I was told to,immediately stop. I’ve had some bloods done today which will test my vitamin D level again and then I need to workout from their the level of supplement if I need any! Good luck xxx
This is a very difficult time for you all. The uncertainty about what is going on must be very difficult to deal with. Once you have some answers in one sense it will get easier as at least you will know what is causing the problems.
Your daughter may or may not have MS, only the medics can tell. If it is MS, it isn’t the end of the world, life goes on. Advances in the treatment of MS and its symptoms are taking place all the time. Fortunately MS is not the disease ti ued to be.
There is a lot of information on the web some of it good, some of it not so good. You must feel overwhelmed by everything at the moment. Take your time and as you start to come to terms with what is going on then it may be helpful to read more about MS. The MS Society and MS Trust are both reputable sources of information and good places to start.
Thanks everyone. I asked to see one of the Drs today. Felt completely fobbed off. My daughter said “if I just have to put up with the pain and you’re not going to be doing anything for me, then I want to go home” He wouldn’t let her. She fainted this morning and was then sick. He wants to check her BP, it was higher on standing than lying down which rules out his theory that she gets light headed when she stands cause she’s spent too long laid down. He wants to check that she’s not inemic due to Naproxin. She’s at her whits end. Her son is 2 and half. He has been okish without her but tonight her sobbed sobbed when we had to leave. I have 2 other grown up daughters who live at home so between us we are getting through. My youngest daughter has had a migraine since Bex went into hospital. I also have a husband who has bipolar disorder which is currently not being handeled correctly and a 4 and half year old sonn too. So yes a hell of a lot on my plate. Thanks for the support. I’ve been feeling very very alone when everyone else has gone to sleep and I can’t drift off.
Hopefully she will be home soon and feeling better in herself too.
I know it’s frustrating for your daughter and I know she just wants to be back at home with her son but if she wants to know what is wrong with her, she really is in the right place and it is best to be patient (no pun intended).
I was admitted to hospital after suffering some strange symptoms almost 5 years ago. My son was 15 so he was old enough to understand but he was still very scared, as was I, and he was in the middle of his GCSE studies so the timing wasn’t great. My mum was in very poor health with heart failure but she moved into my house for 6 nights to look after my son. I hated being in hospital (even worse it was closed to visitors due to the winter vomiting bug) and I missed everyone dreadfully but it was also a relief in a way because I knew that they wouldn’t have kept me in for no reason and I would get some answers. I hadn’t been sleeping very well at home because I was afraid that something else would have gone wrong with my body when I awoke the next morning but in hospital I felt I was in the right place should anything else go wrong.
Hang in there, I know how hard it is for all of you, but sometimes medicine is very complex and the doctors can only work on a process of elimination for many conditions. This all takes a lot of time and a lot of questions, blood tests, poking and prodding etc of the patient. I do hope they get to the bottom of it in the end and that your daughter is home soon.
Liz! my heart goes out to you. My husband has Bipolar and we have lived through some nightmare times, so I know exactly where your coming from. I wish I could say something to make it better, I really do. Are you asking for support from the psychiatric team? My husband is in touch with his community psychiatric nurse regular since my diagnosis…I’m not able to support him as much at the moment…get as much help as you can. He’s doing ok, its just a prevention measure. Your daughter is at the beginning of her journey…I hope the tests give her some answers so she can at least move forward. Can I just say also, that I’m not against taking vitamin supplements but my advice would be speak to your gp or a nutrionist regarding dosage. All the best to you xx
Thanks Blossom. Yes we have been asking for lots of help fromhis team. They really haven’t been doing their job well at all. seems you have to fight to get anywhere with medical people. I felt very frustrated after talking to the Dr who came to see my daughter while I was visiting the other day. He didn’t listen to a word we said. Good news is that the feeling in her feet is coming back and she could sit with us a visting room tonight. Hopefully she’ll be home very soon.
Liz, I too am sorry about your whole situation. I’m not an expert, just one that has been diagnosed since 2006. My first bout with this was in 1999 and they called it optic neuritis , they did a lumbar puncture but still no diagnosis of MS if I had to do it all over again, I would request an MRI, that is the most definitive way to diagnose MS. I do hope that they can figure this out sooner than later, as with all things, time is a factor. Thinking of you and your family Greg