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Just joined

hi all! Just joined and thought I’d better introduce myself. I’m awaiting diagnosis, any diagnosis! Varying symptoms for about two years. Started with pins and needles in my feet on and off. Now have myriad of symptoms. Had a two week period of feeling like I was on a boat out at sea. Had a week of blurred (double vision). Currently suffering with insomnia (2:35 as I write) among other things. Had MRI of head and neck a week ago, awaiting to see neurologist with results. In limbo. My maternal grandfather had MS. No siblings or closer relatives with it.

You all seem like a great bunch of people, look forward to chatting and getting some things off my chest! X

Welcome didds, your user name plays havoc with predictive text try not to surf the net in the wee small hours you’ll never sleep.

Best wishes

Jan x

hi didds

welcome to our world of worries, smiles, friendship.

whilst you are waiting for a diagnosis, it would be a good time to learn mindfulness meditation.

it really helps you to step away from what is going on.

ask your gp if there are any courses running in your area or find it online.

whatever it is that is causing your symptoms, worrying only makes it worse.

give yourself a treat - massage? coffee with a friend?

remember that you will survive.

carole xx

Hi Jan

whoops never thought of predictive text! I did read for a couple of hours, before surfing the net!!! Getting up every half hour to wee didn’t help with trying to sleep! Hopefully I’ll have a better night tonight. X

Hi Carole

thank you for the tip on mindfulness meditation- I’ll look into it. I’m not the worrying type; it would just be good to know what’s going on so I can move forward. My biggest worry is that my husband, who is 17 years older than me, has just been diagnosed with dementia and the logistics of who is going to look after who should I have MS is frankly a nightmare.

Didds x

Hi Didds, good to know you… a nice bunch on here, for the most part, and this is a good place to get things off your chest without burdening people you have to live with! Waiting for the diagnosis is such a worrying and upsetting time, to the extent that the confirmed diagnosis comes as a bit of a relief…I think a lot of us understand that… but a positive diagnosis is not the end of the world, and can be lived with and managed, whichever way it turns out.

Hello Didds and welcome to our happy group. We will listen to your worries and questions and help as much as we can. You can rant or rave and we will understand. I agree with what the others have said and hope it’s a good result that you get. With very best wishes.

Janet

x

Hi Fracastorious

thank you for your comments. It is great to be able to get things off my chest on here! Still waiting for next appointment with neurologist. I understand what you mean by relief; I feel like I have so many weird symptoms that I’m mad, I even said that to the neurologist! It can’t all be in my head, but it’s all so weird…

Hello Janet

thank you for taking the time to type a comment. It’s really heartwarming to know that there’s people out there to listen.

Did anyone have a lot of itching that just wouldn’t subside? My legs itch a lot when I go to bed and get warm under the covers. Anyone have any remedies?

X

hi again didds

i get random itching too.

moisturising the skin helps and i use double base gel everywhere.

extra itchy spots get treated to a dab of rich night cream.

my scalp itches as well.

i must look like i have fleas and nits!

coconut oil helps my scalp.

another trick is to apply hot then cold compresses.

it’s our faulty wiring that tells us we are itching so if i kid it into thinking i’m freezing then suddenly burning, it gets confused and forgets to tell me i’m itching.

carole x

Hi didds, welcome to the group. Your symptoms are well understood by many people here but be positive as there may be a simple answer and not necessarily MS. I live by the hot and cold compresses, they help me and the mindfulness helps many people, not my thing but I’m in the minority. All the best with your diagnosis and remember if you need to shout, scream or just get something off your chest, the majority of people on here completely understand x

Hiya didds

Ellie

Thanks Carole

i do moisturise and have tried Eurax to no avail. I’ll have a go at the hot and cold compresses! X

Hi Pops,

thank you for writing. I do hope you’re right and it’s not MS. I’m a nurse and so have a bit more insight into symptoms and illnesses than the average Joe blogs. I hope I’m wrong tho! After all my knowledge only goes so far! It’s the waiting and the not knowing I guess. I must be patient, stay positive and look after my husband who is worse off than me. Thanks for listening! It’s good to vent!

x

Hi Ellie!

how are you?

x

Hiya

Good ta! Ex nurse too! Please don’t think any of my answers are abrupt-only have sight in one eye and one finger in non dominant hand to type!

Welcome aboard!

Blimey! Type in text speak if it helps!!! So a nurse too eh! Any speciality?

Xx

If it’s keeping you awake, try cold-showering your legs for a bit. Not an attractive prospect when one is in a nice warm bed, but some proper cold can untangle the muddled signals that result in an MS phantom itch. Less bother in the middle of the night than a partial cold shower might be to pad downstairs and get out of the freezer the ice pack that you put in there earlier just in case - then wrap it in a cloth or something (v important) and put it on the bit that itches for a short spell. Also, as a preventative, you might get a hot water bottle to keep your feet warm and just routinely leave the duvet off your legs, so they don’t overheat in the first place.

Alison

Hiya

Def not! I have seen the thread re grammar!

RMN for over 10 yrs. Ru RGN?

Ellie

Hi Alison,

thank you for your ideas. I do often leave the covers off as my legs itch and feel like they’re burning. Then I wake up later shivering!!! I’m getting used to being awake a lot; needing to wee often is another newish problem. I don’t think I’ve slept through the night for 3 months. Ho hum, it’s sure to get better soon

x

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