News of our Nina (Ninagrace)

Primary progressive MS
1

Hi gang, not good news. Poor Nina is having a truly terrible time.

For some months now it seemed as if Nina’s SPMS was progressing in leaps and bounds. Her mobility got even worse than usual, her fatigue & weakness was through the ceiling and she’s had the most awful insomnia. Many nights only getting an hour or two of sleep.

Anyway a few weeks ago she had a routine blood test and it turns out she has a serious level of hyperthyroidism! She’s been put on beta blockers over the Xmas period & this month she has to go to a specialist to have a radioactive injection to make her thyroid under-active, & will then have to take drugs for that for the rest of her life.

The radioactive injection means that she can’t be around children or animals (her beloved dogs) for 3 weeks (actually I think it’s even longer…sorry my memory is letting me down) & can’t even kiss anyone or sleep in same bed!

Even after that it’s going to take a good couple of months before she starts feeling any benefit.

Apart from all the other symptoms which have not improved at all, she has chronic diarrhoea. Everything is going straight through her.

Anyone on here with experience of this with hyperthyroidism?

She’s worried that with the diarrhoea being so bad she might not be able to have the injection. Anyone know?

I think she’s worried that what she’s read on the Internet (site recommended by her doctor) does not mention the diarrhoea being so chronic. Her husband is phoning the GP again on Tuesday when surgery reopens.

She is too unwell to write this post herself & has given me permission to do so.

Apart from any practical / medical advice, I’m sure it will be a comfort to read messages of support. She is extremely poorly & of course life is very hard for her right now.

It’s very easy with MS to blame everything on it, but it goes to show how important it is to get things checked out. That’s no judgement on Nina. Even her doctor thought it was her MS.

On the positive side, hyperthyroidism IS treatable…so in an odd way it’s good news as it’s NOT her MS progressing. Once she has the treatment she should be able to get back to how she was before this nightmare began.

Thanks gang…& Nina, sending you lots of love and hugs.

Pat xx

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Hope you start to feel better soon Nina.

Jan x

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Positive vibes Nina. If you get chance, try watching Animals United on PC or DVD. It’s an uplifting animation.

All my best wishes for 2016. Stay strong.

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Oh I am saddened to learn of Ninas situation. Thankyou for telling us Pat. I hope Nina is able to read these replies, as Im sure just knowing people are rooting for you will make you feel a tinsy bit better hun.

Nina,

Im sure, back in the day, you and I were buddies. I know youve been a member quite a while, like myself.

Its really awful whats happening to you. I think there will be folk here, who suffer with thyroid problems and hopefully will be able to offer advice/support in that area.

As for the diarrhoea, terrible at the best of times and so so knackering, let alone draining…no pun intended chuck!

And all what you cant do after the radioactive injection…how on earth does anyone cope with that treatment?

Well my love, I`ll say tata now and really hope things improve asap for you.

much love and best wishes,

Pollyxxx

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Sorry to hear things are so difficult at the moment for you Nina, I do hope someone has the answers for you, and that you feel better soon.

((((Hugs)))) thinking of you.

Thanks Pat for passing this on, hopefully if Nina can see we are all wishing her well it will help.

Pam x

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Constant diarrhoea is so draining, may I suggest shaking the bubbles out of Coca cola and just sipping at it! It can’t do any harm (as long as not Diabetic) it has amazing properties (replaces electrolytes).

Keep your chin-up Nina, things will get betterM x

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sorry to hear this Nina, i hope you improve very soon,its awful when you are so very ill.

we are all thinking of you and sending positive,healing thoughts your way.

((((((((((((((((((((hugs)))))))))))))))))

Lots of love J xxxx

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Thinking of you here, Nina. Hope the docs can stabilise your thyroid as soon as possible.

lots of love

Kev

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Hi Nina, sorry to hear you are not well. I have the basic underactive thyroid but nothing to what you are going through. I’m the opposite I sleep for hours and also sleep through the day. Even when I’m not sleeping I feel tired. It has taken a while to stabilise but it’s getting there.

My sister in law had what you have but didn’t mention the diarrhoea though but then again maybe she wouldn’t as M said flat coke is very good.

Hope you feel better soon.

Thinking of you ((((Hugs))))

mags xx

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Thanks Pat for letting us know about Nina’s ill health, and Nina for letting Pat tell us.

Nina I hope they can get this sorted out for you. I know very little about the procedure Pat told us about. The last patients I nursed with the condition had their thyroid glands removed. And I never met anyone who suffered as badly as you’re doing. I hope you start to feel better soon, have you been taking diarolyte or something similar that replaces some of the essential electrolytes you’re losing. You can buy them over the counter.

Please keep us posted on how you’re doing, either yourself or through Pat. Take care, fluids, rest and crackers or something similar are in order.

Cath xx

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NinA Sorry to hear you have been so unwell. I really hope you are feeling good better soon. Thanks to Pat for letting us know know. Sending hugs Anne X

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Lots of love Nina here’s some hugs from Margate (((((this is you being hugged)))))

Hope it works out for you. The flat coke thing was recommended to me once by GP.

XXX Don

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Thanks Jan! Hope you are ok?

Nina x

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Thanks Puddle…I will look for that!

take care,

Nina x

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Thanks so much Poll, will keep you posted, hope you’re as OK as possible,

Take care,

Nina x

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Thanks Pam, it’s so kind of you all to send such lovely messages! It’s perked me up no end!

take care,

love Nina x

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Thanks M, I’ve never heard of that before…I will try some today…I’m getting very bored with water so it will make a change!

Hope you’re feeling as good as possible?

Nina x

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Thanks Mrs J, I know you’ve been terrible over Christmas too, hope you’re starting to improve?

Take care,

Nina x

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Thanks so much Kev. Hope you’ve been up to enjoying your new room?

Take care, love,

Nina X

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Thanks Mags,

I can’t find anyone who has had such terrible diaorhea with it…fingers crossed I will be back on track soon!

Hope you’re doing as well as possible,

take care,

Nina x

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