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Lovely day out

Hi all

Hope today is being kind to you all, dry and sun here in Gloucestershire today.

On Thursday my daughter took me for a nose around the shops, followed by lunch, oh what a lovely time I had, when it’s something that you don’t normally do, you appreciate it so much. I knew I would pay for it on Friday, but I thought stuff MS, I had such a lovely day, and as the man was installing the new work tops in the kitchen, at least I wasn’t in the way.

Friday came, and as suspected, I felt like I had climbed a mountain, and was glad to be left in the lounge, while the man tiled the kitchen. Consequently, I just sat and dozed in the chair, taking my time to try to recover from the shopping trip!

Saturday came and the man is back doing grouting to finish off, and I am so pleased with our kitchen update. It’s surprising just having new work tops and tiles, how different it looks.

So, all in all, a few busy days, but enjoyable and so worth it, but I think a quiet relaxing Sunday is on the cards for us. Hope you all have a lovely weekend, take care.

Pam x

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Thats Brilliant, so pleased that you had a good day out…you deserve a lovely rest. I hope that your kitchen goes well.

Michelle and Frazer xx

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Sounds like a wonderful day Pam!

So pleased you like your new look kitchen…lets hope things go as smoothly for Pat when hers is started!

Does your little Yorkie mind having workmen in?

Have a lovely restful Sunday, take care,

Nina xx

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Thanks Michelle, I thoroughly enjoyed it. It’s easy to take things for granted until you can’t do it anymore, and that’s why we appreciate it more.

I could of done with borrowing Fraser to walk alongside my wheelchair, he would have had aa long walk! lol

Pam x

Hi Nina

Yes, I so hope Pat’s kitchen goes smoothly for her, it can be difficult when you have workmen in, that’s why I was so pleased to go out shopping, to get out the way.

Alfie (my yorkie) doesn’t like sharp noises, so he stays out the way, in fact we always put his blanket in the armchair, and he is happy as Larry then. Although he will be 7 this year, we must have the only yorkie who can’t jump, so he stands by the chair and waits to be pic ked up!! (or it maybe that we spoilt him, by always picking him up!!)

Pam x

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It’s lovely to get taken on a shopping trip, any trip out is a great. One shop is all I can manage on my own so a full day out would be a bonus.

Enjoy your kitchen update, I’ve gone for wood effect tops when mine is done, hope I’ve made the right choice.

Jan x

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Thanks Pam and Nina. They start a week on Monday. Yikes!!!

Pat xx

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So glad you had a nice day out Pam!

I know they always going on about ‘pacing’ yourself, but I sometimes wonder if it makes any difference. Seems to me that if you are having a relatively good day, it’s worth just going for it. Make hay while the sun shines!

Pat xx

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I sometimes think if we didn’t make hay while the sun shines we’d never do anything Pat! I know we pay for it the next day but as often as not we pay even if we do nothing!

Ggood luck next week Pat…I’m sure it’s going to be a nightmare for you but think of the joy when it’s all done and you have the flat back to yourself…and Dickie of course!

Nina xx

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Thanks Nina. I think it wouldn’t be so bad if I didn’t have open-plan living room and kitchen.

It’s basically going to be a case of living in the bedroom…but luckily I have everything in there…TV etc…so we’ll be OK. I’m already spending more time in there to get Dickie used to it.

Thanks and hope you’re having a nice relaxing day,

Pat xx

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Hi Jan

Like you I only manage the local shop on my own, so a day out round the shops in the town is fantastic, and because it doesn’t happen that often, it is so appreciated.

Hope you like your new look kitchen when it’s finished.

Pam x

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Thanks Pat, I agree we have to take the bull by the horns sometimes, and put up with the consequences, otherwise we would do nothing.

We had a lovely day, just slowly meandering around the town, and considering the awful rain we had been having, we were lucky to have a dry day.

Hope all goes well with your new kitchen, it will be lovely for you and Dickie.

Pam x

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Hi Nina

I totally agree Nina, do it when you can, it doesn’t go away even when we do nothing.

Take care

Pam x

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Hi Folks

Have only been diagnosed in this last few months with MS. Problems started with back pain down the years which I thought was mechanical wear and tear but then started to noticeably trail my left foot. Went to GP and numerous MRIs later and a visit to neurosurgeon, I was informed I had early stage MS as lesions were apparent in both spinal cord and brain.

Having ongoing pain in bottom left of my back and on occasions excruciating burning pins and needles in my lower legs and feet. Not sure if the back pain is MS Hug as seems too low in my abdomen. Have been prescribed Dulloxetine which appears to give me some relief and I also take cocodamol when the pins and needles are severe. I also suffer severe constipation which I assume are side effects from the drugs.

Don’t feel I have MS but of course cannot question the professional medics. Still trying to hold down a full time job but some days pain is terrible. Am awaiting to see specialist in treatment of MS to be informed if I need to go onto steroid drugs.

Am at bit of a loose end and would appreciate anyone views as to if my back pain could be MS hug and often wonder do I not need a lumbar puncture to confirm if I really have MS. Thanks in advance.

Hi Bracknagh and big welcome to the board.

You have MS. There’s no other way to say it. There is no way any neurologist would give you an MS diagnosis (dx) unless they were absolutely sure of it. It’s for that reason that so many people spend time in limbo waiting for a dx or why some of us have a lumbar puncture to confirm it.

If a neurologist has confirmed you have MS from MRI results, then believe me you have it. You are no doubt experiencing some denial. That’s normal and natural. It’s a hell of a lot to get your head round and thinking that ‘they’ are wrong, or they’ve made a mistake, or you need another test to confirm it, is all part of the course. So I’m sorry to be so blunt, but you do have MS.

If they are considering steroid treatment, then they are thinking it might be relapsing remitting MS (RRMS). Steroid treatment doesn’t help with progressive MS. But it often takes a while for them to work out what type of MS you have. They might be waiting to see if you go into remission, or they might try the steroid treatment to see if it helps, if it does, you’ll get a dx of RRMS.

Your back pain could be a number of things. Secondary pain, which is pain not caused directly by MS but is caused by something else the MS is causing… Best example is if your walking gait is a problem because of MS, then you can get pain in muscles because of the gait. That is secondary pain.

It could be MS hug. It can actually affect any part of the torso and can also be just on one side, but hug tends to come and go and not be ongoing as yours is. Discuss the pain when you next see your neuro. Some pain can be helped by physiotherapy, but sorry to say some pain just hangs around. Different drugs can help so it’s important to discuss it with neuro.

MS is hard to come to terms with at first, but believe me it does get easier. Give it time. Take it one day at a time. Deal with symptoms you have today and try not to worry about what might happen in the future. MS is different for all of us so you will never have all the symptoms of MS and on other hand you might get some that you didn’t expect.

This is a great place for advice, support and friendship so I’m very pleased you found us.

Hope this helps. It probably will be hard to read and I’m sorry about that. Feel free to ask questions.

Take care,

Pat xx

PS, bit of practical advice. If you have critical illness insurance you can make a claim now. Also you should really tell your employer. It is illegal for them to dismiss you because of your dx, and they are obliged to make changes that can help you do your work… Or decrease your hours, less stressful position, that sort of thing.

Pat xx

Hi Bracknagh

Welcome to the forum, lovely people here always willing to help if they can.

Pat and Jackie have given you good advice , but if you drive, you need to in forum Dvla, and normally they give you a three year licence, and also your Insurance, who I believe are not allowed to increase your payment.

Other than that, take one day at a time, listen to yoir body, if it says rest do not fight it, be kind to yourself, take care.

Pam x

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** should say inform Dvla !!

Pam x

Thanks to everyone for replying to my earlier post when I was querying my diagnosis of MS. Of course it is the natural response to be in denial of this condition. However I think at my age of 55, my diagnoses of lesions may be common in many folk who have never had MRI scans.

This forum and web site are a marvellous source for those suffering this condition. After reading the definitions of the various types it would appear I have the progressive form so Pat is right that medications used in RRMS will be of no use to me. However I realise I need to have this confirmed by an MS specialist; recently they have sent me for a 3rd MRI to determine if there is more progression which I assume may be evidenced by more lesions of my spinal cord.

Jackie you obviously started to show symptoms which affected your walking (the same reason why I was sent for investigatory MRIs). Really would appreciate some more info on your condition.

Please be assured I am accepting of the diagnosis as it could be a lot worse and I will endeavour to keep +++.

REGARDS

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Sounds like a lovely day Pam, I find it ridiculous that I’ll need a kip/rest just from meeting someone for coffee!

Sonia x

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