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derby42

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derby42

hello, i'm sorry about this it might be a bit long but i'm in such a mess, i've been reading a lot on forums but this is my first post. I was diagnosed about 5 weeks ago. four weeks ago i had iv steroids in hospital for 3 days. I have hardly improved and i'm scared because the nurse just says to wait. That's all well for her to say but I have a baby of 13 weeks old and I can't care for him, I also have a toddler and an older child and i'm in bed most of the time either fatigued or crying. I can hardly walk. I am worried that something may be overlooked. When this started last year my toddler was 3 weeks old and i began to have wobbly legs. when my new baby was 3 weeks old the wobble stated again, i recognised it from the last time so that would fit in with the diagnosis of ms. The wobbly legs seem better after the steroids. I also have a limp and thats the main thing thats preventing me from walking. That came on when i was 7 months pregnant ( in early march) I saw a chiro as this had happened following a long car journey and a nasty pain in my back upon arrival at my destination. The chiro thought i had a pinched nerve i had drop foot. limp, foot icy cold at night (to the touch), hammer toes and numbness in the leg and foot and the limp was relieved by sitting in a certain position on the sofa. I asked my neuro about this and he said it was a relapse (this was at my recent diagnosis) when i said it had been going on for 4 months he agreed it was a long time ( he said i had rrms) when i asked him why i got releif from certain positions he said he had no idea why. Since then i have seen the neuro physio who also thinks this is odd and when i asked her why my toes were curled under she told me it was because of lesions in my spine. When i told her that there was none there (all brain) she said she could't understand it. This leg/foot thing is stopping me from doing most things but i don't know if it is ms causing that or a nerve and i'm sitting here waiting for steroids to work on not when thet might not anyway. If it IS ms then could they still work even now as i'm losing hope? Or am I mad to think there's something else going on in addition to ms? I'm desperate right now and don't know what to think any more. I'm sorry it's been long I just so want to be able to look after my babies and not drag myself around ( and that's when i'm at my best. Please tell me the steroids might still work and i'm not gonna be stuck like this always, I need to be a mum. Thanks for you patience.

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derby x

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angeltess

Hi, I'm so sorry you're having such a tough time. I'm sorry I can't really advise, but there are loads of people on this forum who will be able to help, so please hang in there. I hope things improve for you really soon. xx.

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Broken wings can heal and mend again. Don't be afraid to cry your tears out loud. Everybody needs to have a friend. Wishbone Ash.

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derby42

tHANKS so mUCH FOR REPLYING SORRY ABOUT THE CAPITALS I CANT GET THEM OFF WHEN I USE THE PHONE. ITS JUST NICE THAT I HAVE A REPLY. I HAVE NO FRIENDS NEAR TO ME AS WE


derby x

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Christina

Hello and welcome to the forum

 

You sound like you're having a very tough time at the moment. Steroids can take up to 6 weeks to work and improvement can be slow. How well they work depends how long the relapse has been happening before treatment starts. If it's longer than 6 wks then it's likely steroids will be less effective. Apparently there is this window of opportunity. However don't get too downhearted yet because your relapse will improve regardless of the steroids but can take weeks to months - it's impossible to say for sure. Relapses after childbirth can be pretty dramatic and scary but things improve with time. Have you been in contact with the MS Trust or MS Society for further info on MS and relapses particularly after childbirth? They have some good publications that are downloadable and also Helplines if you would like to talk to someone.

I hope this helps a bit. Try to think positively - relapses improve with time and hopefully you will get to a more stable place again.

 

It is very early days for you to come to terms with the diagnosis plus trying to cope with a young family.

Take care and please hang around with us for some support.

 

 

Chris x


Edited by Christina
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Not waiting for the storm to pass, but learning to dance in the rain ....

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derby42

THANKS FOR THAT CHRIS. I HAVE SPOKEN TO ONE PERSON ON THE PHONE BUT THAT WAS ABOUT MY DIAGNOSIS. COULDNT UNDERSTAND WHY I ONLY HAD AM MRI WITHOUT CONTRAST AND NO0OTHER TESTS. ANYHOW. . THE THING IS I DONT KNOW IF THIS LIMP AND LEG STUFF IS A RELAPSE COS ITS BEEN GOING ON FOR 5 MONTHS NOW AND HAPPENED WHEN I WAS 7 MONTHS PREGNANT.I THINK I DID RELAPSE AFTER THE BIRTH COS THE WOBBLY LEGS CAME BACK JUST LIKE LAST YEAR AFTER ID GIVEN BIRTH AND THAT SEEMS A BIT BETTER NOW BUT ITS ALL THATS GOING ON WITH MY LIMPING LEG I CANT WORK OUT. 5 MONTHS AND ITS STILL THE SAME AND ALL THE OTHER STUFF THAT NO ONE SEEMS TO UNDERSTAND BUT THEY DONT SEEN INTERESTED IN FINDING OUT. IF IT WAS INDEED A RELAPSE AFTER ALL THEN THE STEROIDS


derby x

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Christina

Hi again

 

I was told that most improvement happens up to 6 months after a relapse but that there can be continuous small improvements up to 12 months. Unfortunately we dont always get back to 100% after relapses. I have residual symptoms too I'm afraid which I know I'm stuck with. Has your Neuro spoken to you about disease modifying drugs at all?

 

It's one of the most frustrating things about this disease, never knowing what to expect next and never knowing whether you'll get back to where you were.

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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Hezza

Hi and :clapping: derby42

 

There's not a lot I can add to the great advice that Chris has already given. Unfortunately MS is unpredicatable and varies from person to person so it's impossible to put timelines on things but I too have been told that generally how much I have recovered within 6 months of relapse will be as much as I am going to. None of that helps any of us when we're waiting and hoping for things to improve or to know if how we are is as good as it's going to get :banghead:

 

I can't say whether what is going on with your leg is or isn't MS but I would advise that if you're at all unconvinced with MS as the explanation then keep pusing for more answers. I don't know what's the best way to go about that but I'd suggest either a conversation with your GP explaining your concerns or perhaps a chat with your Neuro Physio asking if there are other things that could be looked into as some of what is going on isn't "typical" for MS. Have you been referred to an Occupational Therapist at all? If not it might be worth asking for a referral as they may be able to advise on gadgets, supports etc. to help you get around more easily.

 

In terms of getting more information about MS I personally found the publications from the MS Trust really helpful when I was diagnosed. As well as being able to read them online you can order free copies to be delivered to your home - that was great for me because then my hubby, friends and family would pick them up and use them too.

 

Take care :flowerface:


Life is short. Eat dessert first. Jacques Torres

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Christina

I agree with Cara, having a hard copy of useful publications hanging around at home can be just as useful for your family as you. They can pick them up when they have a spare moment, have a browse and hopefully learn a bit along the way. There is also a book I would recommend which I read when first diagnosed called Coping with MS by Cynthia Benz, available through Amazon.

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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derby42

thankyou all so much for replying. i'll look at the publications and book looks like it will be helpful. i've not been offered drugs just diagnosed, given steroids and sent home. i would do anything to be able to walk and take my children out. my family is in prison with me and i feel so dreadful.i just don't know what to think. I don't dispute the diagnosis it's just the other stuff. I feel like I may have relapsed after the birth because the wobbly legs appeared and they seem to have improved since I had the steroids but this limp and drop foot just appeared when I was 7 months pregnant and hasn't changed at all apart from when I get my legs up for a few minutes. I can improve it a little if I sit in certain positions as i posted before but this just lessens a little i still cant walk out of the house. The best its been is when I laid on a hot water bottle for 4 hours one night and then had to go out unexpectadly, I walked very well for the hour I was out but the next day i was back to the limp again. i dont know if this was a relapse or not.anyway im just banging on now. sorry to vent, gives my hubby a break from me wailing like a baby! these drugs?? might they get me walking again? ive been on the swank diet since i returned from hospital but hubby thinks i rushed into it cos ive lost a stone in a month, im just trying anything right now.


derby x

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valt59

Just wanted to say hello2.gifand sorry you're having such a hard time at the moment :clapping:

 

Having only just joined the forum myself all I can say is that you will find excellent advice and very friendly people here :flowerface:

 

I hope that the medics etc can get to the bottom of your problems and that you can start to feel a bit better and are more able to enjoy your family :banghead:

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Hezza

Hi hon,

It is possible to be supplied with braces or splints to help with foot drop which may help your walking. There are a few past topics about it. I've pasted a couple of links below and you can find others by using the search function at the top of the page:

 

http://ms-people.com/forum/index.php?showtopic=4936&st=0

http://ms-people.com/forum/index.php?showt...mp;hl=Foot+drop

 

I've never tried a specific diet for MS, I just try to make sure that I eat reasonably well and I take a multivitamin supplement too. I do indulge in all of my favourite things too though - cupcakes, chocolate, ice-cream. As I once told a nurse who was lecturing me about weight having MS can be difficult enough so if I want a chocolate I'll have one. As it happens as a result of being more active since a house move at the end of last year I've lost about a stone in weight despite having a cupcake a day :clapping:

 

I do believe that we each have to do what is right for us as individuals. How are you getting on with the Swank diet? If you're finding that you feel better for being on it that's great. If you're finding that it's another thing to worry about and struggle with then I'd say that maybe, for now, you have more than enough to deal with without adding a diet overhaul into the mix.

 

I guess what I'm trying to say is to do what feels right for you but try not to put yourself under more stress than you're already dealing with :flowerface:

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Life is short. Eat dessert first. Jacques Torres

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Christina

Another thing I would add regarding your leg and foot drop is that it might be good to see a physio who will be able to tell you more about what may be happening and also help with exercises and a leg brace if they feel you need one. Perhaps if you have an MS nurse you could give them a ring and ask to be put in touch with a neuro physio, also it sounds like a chat with the nurse might help you generally too.

 

Asking about disease modifying drugs, which are all injectibles by the way, is something you could also discuss initially with the nurse but definitely query next time you see your Neuro.

 

Chris x

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Not waiting for the storm to pass, but learning to dance in the rain ....

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derby42

YES IVE SEEN THE NEURO PHYSIO SHE JUST GAVE ME A CRUTCH TO WALK WITH BUT IM TOO UNSTEADY OUTSIDE WITH MY KNEE LOCKING. IM STARTING TO GIVE UP HOPE OF WALKING AGAIN NOW IVE BEEN LIKE THIS FOR 5 MONTHS. I HAD THE STEROIDS 5 WEEKS AGO NOW AND NOTHING I DO SEEMS TO HELP. MY POOR CHILDREN THATS ALL I CAN THINK OF. NURSE DOESNT SEEM INTERESTED SHE SAYS JUST WAIT. I THINK THE REST OF MY LIFES GONNA BE LIKE THIS.


derby x

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Christina

It sounds like you have explored all avenues hun, I guess all you can do now is just wait and hope this improves with time.

 

If it doesn't then there are other mobility options such as a scooter or occasional wheelchair. I really hope things improve for you soon. It's a stupid disease isn't it?

 

Take care

Chris x :flowerface:


Not waiting for the storm to pass, but learning to dance in the rain ....

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derby42

YEH ITS CRAP. AND SO IS THE LACK OF SUPPORT IVE HAD FROM THE REAL WORLD. I THANK GOD FOR ALL OF YOU YOUVE BEEN AMAZING. AND GOD IS WHERE MY MONEY IS RIGHT NOW. PRAISE THE LORD THATS ALL IVE GOT TO SAY.


derby x

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derby42

having a rough time today. the world goes by and im a prisoner in my house. so is my family and the guilt is overwhelming me. im sorryto be such a misery i just want to scream. is this going to be it? watching my family from afar because i cant do what normal mums can do.


derby x

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Procrastinating
Stumbler

Hi sweetheart,

 

I know where you're coming from and can share your feelings. I was taken ill on holiday, which lead to a whirlwind exacerbation. I returned from holiday and did 10 days in hospital. I'm now home, but as useful as a chocolate teapot!

 

I don't have the responsibilities that you have, my two sons are now in their 20s, but my wife deserves to be treated as a wife, not a carer.

 

Our seas are both a bit rough at the moment and we need to allow it to calm down. In situations like these, you have to accept the support offered by your family. We have to ride out the storm, it will pass, just not today. Maybe tomorrow.

 

Don't punish yourself further at the moment. You need to allow your body to shut down a bit, relax and allow it time to recover.

 

You can repay your family in the future, but in the meantime, you have to be selfish and allow yourself time. You'll be a Mum again soon.

 

We'll both get there, I'm sure.

 

:hearts_circle:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Christina

Sorry to hear you're having a hard time John. Did you manage to enjoy some of your holiday? I agree that this bloomin disease needs lots of patience and waiting. I've had a couple of days in hospital too and am slowly slowly recovering, I think.

 

Take care and feel better soon.

 

Chris x


Not waiting for the storm to pass, but learning to dance in the rain ....

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angeltess

Hi Derby,

 

could I just add that I think John's words are spot on. I'm not in your shoes, I know, but have had 3 children, and when they're still so young, it's really tough,without all of the other issues going on for you.

 

I just wanted to say please go easy on yourself - if your husband was poorly, or one of your children, I'm sure you'd willingly take over till things were better - and I bet he feels the same. None of this is your fault, and feeling such guilt won't help you feel well again.

 

I really hope things improve for you very soon. Jan. xx.


Broken wings can heal and mend again. Don't be afraid to cry your tears out loud. Everybody needs to have a friend. Wishbone Ash.

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derby42

THANK YOU FOR YOUR KIND REMARKS AGAIN. IM SO SORRY TO BE SO DOWN. I JUST DONT WANNA WAKE UP IN THE MORNING ANYMORE. I JUST SPEND MY DAY LYING ON THE BED POPPING DOWNSTAIRS NOW AND THEN AND EVERY DAYS THE SAME. IT SOUNDS LIKE YOU HAD A BAD TIME JOHN ARE YOU FEELING ANY BETTER NOW? I KNOW WHAT YOU MEAN ABOUT YOUR WIFE IVE ONLY BEEN MARRIED FOR TWO AND A HALF YEARS AND CANT STOP TELLING MY HUSBAND HOW SORRY I AM. WE HAD 2 BABIES CLOSE TOGETHER AND NOW HES LOOKING AFTER THEM AND ME. THIS IS HAPPENED SO VERY QUICKLY. 5 MONTHS AGO I WAS PREGNANT AND SURE DIDNT EXPECT THIS.

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derby x

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Procrastinating
Stumbler

No-one can anticipate what's coming around the corner - that's life.

 

You need to get off the guilt trip, none of this is your fault. Be selfish and allow yourself time to recover.

 

You'll soon be back to being a mother, wife and lover.

 

Just give yourself a break. It ain't easy but always look forward to a new day with positive thoughts.

 

"In every day, in every way, I'm getting better and better" {Frank Spencer} (Depending on your age, you might have to ask who Frank Spencer is!)

 

Take care of yourself as a priority, then you can start taking care of your family.

 

:hearts_circle:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Nick

Derby,

John's said it all ! Take his advice, its so hard to let go and allow others to help take the strain....but you have just got to do it. This is such a fantastic forum and I just know that we are all thinking about you and doing our very best to help ........hang on in there and try to stay calm. We understand precisely where you are at at the moment and understand how you are feeling.

 

Nick


Just another Warrior...........

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derby42

TESS CARA VOLT CHRIS JAN HEZZA JOHN AND NICK THANK YOU ALL SO MUCH. ITS TAKEN ME ALL DAY TO POST THIS MY PHONE IS PLAYING UP.


derby x

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derby42

me again. stupid phone took me about 20 attempts to post the last message just so wanted to thank you all. i love frank spencer by the way john im 41. only been married for 2 and a half years.life begins at 40 eh?


derby x

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derby42

CAN YOU PLEASE TELL ME IF THERES ANY DRUGS THAT MIGHT IMPROVE MY LEG AND WALKING? IVE READ A LOT ABOUT PEOPLE IMPROVING BUT I JUST DONT UNDERSTAND ALL THIS YET. I STILL THINK THERES OTHER STUFF GOIN ON THOUGH. 5 BABIES 2 IN THE LAST 18 MONTHS IM 41 AND MY PELVIS MUST HAVE TAKEN A BEATING. PHYSIO AND CHIRO MENTIONED SACROILIAC JOINT BUT THAT WOULDNT PRESENT LIKE A TRAPPED NERVE I THINK. I MIGHT BE WRONG. JUST FEELS LIKE EVERYTHINGS BEING BLAMED ON MS.


derby x

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