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Mums with MS

(12 Posts)
pdm Wed 14-Mar-12 16:08:55

Hi Everyone,

After several years of strange neurological problems and following a bout of optic neuritis, I've been diagnosed with relapsing remitting ms, I just wanted to see if there were any other mums out there with young kids and MS and if you had any stories to share or experiences of the DMTs?

I have two young boys, aged 5 and 8 and trying to stay positive smile

freshcreamscones Thu 15-Mar-12 15:29:09

So sorry pdm about your diagnosis, I don't have any knowledge on ms, but I'm sure someone might be able to help. I hope you are ok.

freshcreamscones Thu 15-Mar-12 15:29:13

So sorry pdm about your diagnosis, I don't have any knowledge on ms, but I'm sure someone might be able to help. I hope you are ok.

bloggingmamatotwo Thu 22-Mar-12 13:57:18

Hi PDM,

I'm pretty new to mn, but I wanted to reply, I have nt had a diagnosis (yet) I had an MRI and awaiting the results afte a few years of problems....it may not be MS or I may not get a diagnosis at this stage, but I understand what's it's like to have neurological problems and try and parent...I have a 7 month old and a 30 month old.....I had optic neuritis (sp) over Christmas and my other symptoms are not visible to the world so I struggle with feeling a bit crazy, (ESP, without a diagnosis) but I have a permanent numb big toe, intermittent numbness in my fingers (both hands) weak,clumsy hands and pain behind the left eye as well as extreme tiredness but I think that's probably due to the fact my baby wakes sooooo often at night....!

Anyway I'm rambing on, maybe there are others that have MS or are on the journey to being diagnosed?

Do you mind sharing your journey to diagnosis? Are you going to go on the dmd's now?

I've read a lot that if the disease presented slowly and being female gives a much better outcome of how it will progress, also I'm sure you've read about taking a really high dose of Vit D?

Look forward to hearing from you....

weegiemum Mon 26-Mar-12 02:24:52

Do you mind if I say hi? smile
I don't have MS but I'm recently diagnosed with CIDP (chronic inflammatory Demyelinating Polyradiculoneoropathy), which is loosely related to MS. I have no feeling in my lower arms and hands, lower legs and feet and different levels of numbness up to my hips and in my face. I can only walk a short way and have a wheelchair.

My nerve damage is permanent but they hope they can stop it spreading by using immunoglobulins IV so I'm off to hospital tomorrow for more of that!
I have 3 children all at primary school and a very devoted dh. We're moving house soon to one more appropriate to my needs, with walk in shower, downstairs loo etc.

One of the biggest differences with CIDP is that it's not relapsing remitting but progressive.

So not the same but still neurological and I've had the full round of neuro testing - these people know how to test! Every blood test under the sun, MRI, 2 CT, ultrasound, Xrays, emg nerve testing, the works. Parenting with a neuro condition is quite a challenge as I don't want my children to become young carers, dh works long hours as a GP, and I have very little use of my hands for cooking etc. I've applied for DLA so we'll see how the assessment goes for that.

ihearthuckabees Sun 01-Apr-12 18:40:59

weegie, just wanted to say that I'd seen your other threads and the CIDP sounds awful. Hope you are coping ok and that the treatment isn't too arduous.

Stitchthis Thu 12-Apr-12 06:51:17

You guys still around? I'm part of the dodgy brain club...Parkinson's wink

forcookssake Sun 15-Apr-12 19:46:09

Hi pdm, just found this section and then your thread. Sorry I'm late to the party!

I have MS and am using DMT - Rebif, with success, for the last 8 years. It's great that you're aiming to stay positive, I was furious when I was first diagnosed but that passed and now I have a fiery, stubborn can-do attitude. Which helps grin.

I have had a couple of relapses over the years, plus weird symptoms that I'd never thought my body could produce, but I'm still me. Message me or post here if you'd like, I can happily share my experiences of MS. I should add, me and DP are in discussion about when to TTC in relation to my wellness+MS, so that's my current preoccupation!

pdm Sat 28-Apr-12 15:33:02

Hi All,

Thanks for all your replies, I have started on Copaxone now, about 10 days ago and seems to be going ok, no horrible side effects at the moment which was one of the reasons I avoided Rebif and the others because I couldn't cope with the thought of flu like symptoms for months.

I'm hoping that now I've started treatment things will start looking up a bit, I feel like I've had a horrible six months, feeling really down in the dumps and depressed, but like forsookssake I'm starting to feel quite stubborn about it all and just want to do everything I can to try and stop further relapses!

Has anyone gone down the food intolerance route? I had some blood tests done which have come back with all sorts of things I should avoid, wheat, cows milk, egg, all the usuals, part of me says give them all up and see if it works, another part of me says its a con and I'd be better off eating a balanced and varied diet.

Over the last few weeks I've had another relapse, probably down to the stress of the diagnosis, and have been only a whopping dose of steroids (prednisolone tablets) which have felt like poison, I think I'll definitely try and avoid those next time.

Bloggingmamatotwo, did you get a diagnosis? I think with me it was more a case of exhausting all other options for my neurologist, he then sent me to see a colleague of his who was more experienced in inflammation, I was expecting further tests but the colleague just came straight out and said it was MS and wanted to start DMTs straight away! Was a bit of a shock seeing as the original neuro had pretty much told me it wasnt MS! I think the optic neuritis was the deciding factor in my history!

Nice to get so many replies smile

msmummyoftwo Sat 21-Jul-12 17:46:03

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

msmummyoftwo Sat 21-Jul-12 17:51:17

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msmummyoftwo Sat 21-Jul-12 17:51:44

woops didnt mean to post twice smile

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