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MS Diagnosis After Giving Birth

36 replies

EmsTomot · 13/09/2006 16:37

Wondered if there are any moms out there that have MS or if anyone is currently undergoing tests to determine a diagnosis.
I would really like to know some coping stories to reassure me for the future.

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jalopy · 13/09/2006 19:38

Bumping for you. Sorry that you are going through such an anxious time. I know that someone has contributed before about MS but I can't remember their name. Hopefully someone can advise you soon.

ParanoidAndroid · 13/09/2006 19:58

Hi - I'm sorry to say that I don't have any coping stories either. I was told on Monday that I have a 50/50 chance of having MS as well (I've got optic neuritis now which apparently is one of the big signs). I saw my GP today who is talking to the neurologist so I should hear more tomorrow.

The GP did say to me that there was a good chance that it isn't MS as I only have a couple of the symptoms - tingly hands for example.

What I have found by googling the net is that there are some great MS websites with some good stories.

What's your situation?

alexa1 · 13/09/2006 20:03

Emstomot - I am glad jalopy bumped your thread as I read it earlier but didn't have any advice to give u.

I hope someone on here knows something about the condition. What are your symptoms? Are u on medication?

tamum · 13/09/2006 20:05

I have two friends with children who have MS, and one with no children. One (my best friend from school) had some symptoms before having children, then had 5 years free of anything and then it started up after she gave birth the 3rd time. She's still mobile, 10 years on. It's not easy, and not trivial, but it's not always as bad as you might think. The other swears by interferon and is still mobile and working. I am pretty sure thewomanwhothoughtshewasahat has MS- maybe she will see this and help. Issymum's dh, too.

Good luck Emstomot, and Paranoidandroid.

EmsTomot · 13/09/2006 20:17

Thank you for your replies. Like ParanoidAndroid I have had tingly hands and feet, particularly down the right side of my body. I have had blurred vision in my right eye for over a year and a half and was under investigation for this on its own. However pregnancy presented new systoms and since giving birth, I have had relapses that have included losing my grip completely in my right hand and not being able to wind my baby properly. I have had some visual tests and am waiting for my second MRI scan (the first one a year ago was clear) The doctors have also mentioned a lumber puncture. I am not frightened of having MS if it is this, there are many types of it (have also been reading up) but am terrified of it taking away some of my baby's childhood - I know you should not go on "what ifs" but you do.

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EmsTomot · 13/09/2006 20:21

Should have actually included my best wishes to ParanoidAndroid, I am not pleased that she is going through this as well but obviously it does help when you know it isn't just you (hugs)

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tamum · 13/09/2006 20:22

I can completely understand. FWIW my friend's children are now 16, 14 and 10 and have honestly never missed out on being with their mother. She's been there for them throughout and they have never known anything else, really. It doesn't really help though, does it?
xx

Janbo25 · 13/09/2006 20:32

what tend to be the starting symptoms of MS?? I think I may have it!

EmsTomot · 13/09/2006 20:44

The symptoms for MS can mirror symptoms for losts of other things so it is best to consult a Doctor. Blurred vision is an indication, change of colour vision and pain when the eye is moved in the socket. Pins and needles or tingling in hands and feet plus an array of other things.
MS affects a lot of people and comes in different forms from hardly any relapses (when a new symptom appears) to devastating.
It is caused by your body attacking the coating of the nerve branches so that when a message is sent through the body, it jumps elsewhere, hence why you can lose grip, lose sensation etc.
There are different degrees of it and some horror stories bounding around the web so please be careful if looking into it.
I was hoping someone would have it who is coping very well and leading a "normal" life despite the illness. If you are really worried Janbo - please speak to a Doctor.

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EmsTomot · 13/09/2006 20:46

Also need to add that most people under investigation are usually not found to have it. There are so many symptoms and criteria and a diagnosis is not reached quickly or easily - the waiting and the tests are probably the hardest part - especially the more invasive tests.
Paranoid, have you had an MRI scan yet? - Good luck with your neurologist.

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ParanoidAndroid · 14/09/2006 10:02

No, still waiting to hear.

I'm sorry to hear your story - you've certainly been through the mill recently. I was lying in bed thinking about it in the small hours (as you do) and remembered that my brother in law has two friends with MS - one who is quite badly affected but apparently he drinks a vast amount, has taken all sorts of drugs etc over the years, and was in appalling shape even before the diagnosis. The other friend has a very positive attitude to it, is heavily into complementary medicine (ie, in addition to pharmaceutical treatment) and is doing really well and still lecturing.

I think, from reading about it, there seem to be the different types and without knowing which type one has, it is nigh on impossible to give a prognosis. There seems to be an absolute overload of information and scary stories out there (as you say) and I think it is important to 'screen' the information we absorb. My mum and I both had breast cancer at the same time and I found it was the same then - everyone, with the best of intentions, had some advice, something they'd heard on the radio, someone they'd known etc etc etc, and in the end, the only thing to do is to find a source or two that you trust (I trusted my surgeon and the oncologist) and listen to them only. Not sure whether that makes sense, but it seemed to work for me.

I can't believe that having MS would adversely affect your baby's childhood. You sound like a very caring mum, and I think as with all sorts of other situations whatever the illness, mums cope and children adapt. I've been through the cancer and three years of severe depression, and tbh I was convinced that I have completely ruined my children for life. As it is, they are perfectly well-balanced happy children. They understand that there are somethings I don't like doing - going into very noisy places for example - and that there are times when I would need to spend the day in bed crying, but they always understood that it was never anything that they had done, and nor could they do anything to make it better, just give lots of hugs etc, and now thank god, we are all out of that hole. The children were 4 and 6 at the time by the way.

Sorry, I'm rambling now! I'm thinking of you, and as you say, even if there is no-one else who comes along with positive stories, we can support each other.

EmsTomot · 14/09/2006 10:12

It is lovely reading your reply this morning. I think if you have battled and succeeded with breast cancer, you are obviously a very strong person already.
I find it comforting to hear that children adapt, of course they do because they unconditionally love their mommies! Maybe I was being a bit selfish - its annoying that you can robotically rhyme off the supposed symptoms, treatments etc but can't say to what extent you can cope as a person everyday once you know.
Its perhaps even scarier to think if it isn't MS, what the hell is it?!!!!!
Am starting pilates in an attempt to know the movement of my muscles & enhance control etc - well apparently thats wht it does, but not doing so well as would stll rather play with bub on his play mat!!!

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ParanoidAndroid · 14/09/2006 12:26

How funny - I've just started pilates too!! I had my first class on Monday - what a laugh! There seemed to be so many things to remember - pelvic floor, neutral position, breathe, move this up, hold this down etc etc - that I couldn't get it together at all! (I remember doing step classes years ago which were like this so I live in hope of being able to do more than two things at the same time!) How are you getting on with your classes? Or are you doing it at home? I quite appreciate the distraction of a baby - I'd rather play with the baby too!

EmsTomot · 14/09/2006 13:20

Funnily enough - I have a purple yoga mat and pilates DVD! I have read the book and attempted some of the exercises and to struggle to remember to breathe, let alone focusing enough to control and centre the breath!
Still, I will get the hang of it and when Tom gets older, will invest in some classes outside my four walls!
Did you start your classes because of your possible diagnosis, or was it something you just fancied doing?

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EmsTomot · 14/09/2006 13:25

Oh my goodness, having a nightmare - where did this weather come from? I have a river going through my lean-to, thankfully Tom is asleep but it took me forty minutes to settle him on my knee, with lots of cuddles and that wonderful dummy! - He is so windy today - my ninth cuppa just went cold - actually I joke with my mom that tea has caused all this MS millarky - I gave it up cold turkey when pregnant (and I drink ALOT!) which can't be good for the system and now have well and truly stepped back into old habits! Can't help it, it tastes so damn nice! Got to go and sweep this water away from my washing machine plugs...

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alexa1 · 14/09/2006 17:23

Emstomot - If it turns out you have MS then reflexology is supposed to be great for easing symptoms etc. My brother-in-laws mum had MS for years and had reflexology regular.

ParanoidAndroid · 14/09/2006 17:51

Reflexology sounds good. Mum had it with her cancer and she swears by it.

I started Pilates because I am just not strong enough I ride horses a lot, walk miles etc but for some reason I get a lot of lower back pain hence doing the pilates.

We've not had lots of rain here today, we just had it all in the night. My poor old landrover leaks so when I got in it this morning, both front footwells were about an inch deep!

Nothing wrong with tea I reckon, I swear by it! In fact, I'm going to go and make a cup now. I would offer you a cup but I'm not sure that pouring it over the computer will help !!!

EmsTomot · 15/09/2006 08:53

Bad night yesterday, not sure if symtoms come on with stress - do you find this PA? - My baby has had a couple of really nasty nappies - watery poo and has been crying with tummy pain (can tell because he stops if you rub his lower back and he is kicking his tum)
Don't know at what stage to take him to the Doctors - is down on his feeds but not by a massive amount - just grizzly.
This morning he is as bright as a button so I thought I would wait to see what his morning feed (normal ounces taken) would do to his tum and then call the Doctors.
Last night, after we finally settled the little lad, I got painful prickly heat type feelings across my knuckles, lost the grip in both hands (at different times) and my right leg went bloody funny - it was really late so could have been tiredness and I am worried about Tom.
This morning, I just feel weak and horrible but then did do a lot of crying yesterday evening with tiredness - do these sound like similar things that affect you?
I have not had any symptoms for the last two weeks so last night was a bit of a draw back. Feel crap to be honest.

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ParanoidAndroid · 15/09/2006 09:08

Poor you, and poor Tom. I do find when I'm tired and/or stressed, the tingling gets a lot worse - it's in both hands and one foot. My eyes have usually been fine until this ON attack. But the numb hips get loads worse and I get v. wobbly. I am sure there is a link between stress and tiredness etc. When Tom has his sleep this morning (assuming he has one of course ) why don't you try lying on your bed, pillows under your knees, arms by your side, head flat on the bed and then do some deep breathing exercises. These usually work for me but ignore me if you've done them already!

i think we need to accept that there are going to be occasional bad days - for all sorts of reasons not just MS - and to try not to beat yourself up. Have a cup of tea, go really slowly today - cancel anything that you don't want to or don't have to do - and just take it easy. If Tom has had a grizzly night too, he might not be up to much either. Do you have any family or friends near by?

EmsTomot · 15/09/2006 09:49

Thank you. My mom has called twice this morning - they live about an hour away and I don't get on with the mom in law who lives five minutes away! I feel unsteady and my fingers are tingling but I have had a cuppa (of course!) and feel less upset.
Sorry to sound down, you lose focus don't you?! Tom is asleep at the moment so I am going to try some deep breathing and get everything back into perspective.
The thing that upset me the most yesterday and is lingering in my mind this morning, is that I asked his dad to put on his fleece sleep suit last night (its a fiddly thing with a zip and small buttons) - I don't know why I asked, I always put Tom to bed - I think it was because I was frightened I would struggle with such a simple task, not so much that I knew I would and therefore, just backed away.
Tom still got his kiss and cuddle - but backing away from basic care - why would I do that?

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ParanoidAndroid · 15/09/2006 10:04

Because you're feeling low, that's all. Don't be too hard on yourself. You'd had a tough time with Tom not feeling well, you were tired and emotional and didn't want to have something else remind of you the possibilities of MS and the future etc.

I think it seems like a really significant thing when actually in the long run, it doesn't have the weight or importance you have attached to it. I don't mean to sound harsh - goodness, I've been there so many times and will feel the same way again many times more. But when we are tired, things play on our minds so much more.

As you said, Tom still got his cuddles and that's what you and he will always have - irrespective of health or who puts on his fleece suit or who picks him up from school etc etc etc - you will always ALWAYS have that close loving relationship. Those cuddles will never stop.

I wish I could give you a big hug and make you that cup of tea!! (Whereabouts are you by the way - you never know, we might be from the same area!)

I've got DS off sick at the mo - he's lying in his bed reading, giving me the odd instruction like "could I have some more water, could you close the curtains, could you get me another book, could you......" I don't think it is going to be long before I get mildly ratty

So I'm going to take my own advice and go and make a cup of coffee whilst doing some deep breathing!

moyasmum · 15/09/2006 10:06

your kids will have a wonderful mum who might or might not have specific needs.Remember to shout out for help when you need it ,thats what all mums should do.
I have benign ms,walk fine ,drive ok (they go by how affecting your symptoms are ,not whether you have clinical evidence eg plaques or banding in you csf)It depends where the plaques are along the spinal cord or brain that determins the severity not necessarily the number.
If you have ms it is an individual dianosis so please dont panic and I would really recommend the msrc.co.uk who really kept my head together when i did panic (a bit!).There is more info out there in the ms community (online)than you will ever get from gps(bless them)and the more info you get the more in control you feel, which with ms has got to be good.
ms is the most common neuro disorder in young(ish) adults and a lot of people have only one or two attacks ever,this could be you ,and me.
good luck

moyasmum · 15/09/2006 10:06

your kids will have a wonderful mum who might or might not have specific needs.Remember to shout out for help when you need it ,thats what all mums should do.
I have benign ms,walk fine ,drive ok (they go by how affecting your symptoms are ,not whether you have clinical evidence eg plaques or banding in you csf)It depends where the plaques are along the spinal cord or brain that determins the severity not necessarily the number.
If you have ms it is an individual dianosis so please dont panic and I would really recommend the msrc.co.uk who really kept my head together when i did panic (a bit!).There is more info out there in the ms community (online)than you will ever get from gps(bless them)and the more info you get the more in control you feel, which with ms has got to be good.
ms is the most common neuro disorder in young(ish) adults and a lot of people have only one or two attacks ever,this could be you ,and me.
good luck

EmsTomot · 15/09/2006 10:11

From the Burton on Trent area. Thank you for your loveliness! I have turned a corner whilst reading the post and have told myself to pull it together - these bloody hormones! No doubt I'll be in tears again later at some point! The breathing really helped - took me back to labour slightly!
You are right, I am knackered and that makes the difference every single time. Hope your little one gets better soon, try this one...if you are well enough to sit up reading, you are well enough to help mommy do some housework! -
You might get an impromtu nap out of him!
Bless!

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EmsTomot · 15/09/2006 12:26

PA, my mom has turned up out of the blue and is taking me back "home" for the chance of a bath and a really good sleep.
Have a lovely day yourself and thank you for all of your help this morning.

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