Any news from @Kemety

Hi my LAM Sis! 💖

How are you getting on?

Lots of love,

Fran xx

[sassy59]

Let’s hope Kemety is well and will be in touch soon. Xxx 😘😘😘😘

[Hidden]

In hospital again having brain scan just on route for mri as got chiari type 1 malformation gutted it's one thing after another xx xx my spinal chord and brain are touching but are doing something of concern ...got bad pain in my head the other morning so thought I had a bleed xxx

[breatheeasy1 in reply to Hidden]

Oh Mel I'm really sorry to hear that. I've everything crossed for you. Lots of love and healing hugs honey ❤💕💪💗

[Hidden in reply to breatheeasy1]

Thanx Anne xxx Hope your doing ok xxxxx

[skischool in reply to Hidden]

i hope they sort you out rapido Mel,we all miss you on the site and you have been through so much pain already.like breatheeasy Anne crossing all available digits which is painful for an old git like me. xx

[Hidden in reply to skischool]

Thanx ski's ....like they say they need to find a brain b4 they can treat it ha ha

[sassy59 in reply to Hidden]

Bless you Mel and hope you are getting good treatment. Thinking of you. Xxx

[Hidden in reply to sassy59]

Thanx Carol xxx your always 1st to reply back it's quite remarkable ha xxx I always know yours will be the 1st message back ....hope you and Pete are well xxx

[sassy59 in reply to Hidden]

I like to reply when I can and hope things improve for you soon.

We’re ok here thank you.

Love and hugs xxxx 💖😘👍

[Stumpy55 in reply to Hidden]

Ah Bless you Kemity, this is aweful for you. I will pray for you. Keep thinking positive as you always do, you are a fighter and I admire you for it. Please keep Intouch with us? 🌹xxx

[Hidden in reply to Stumpy55]

Oh thankyou for your kind words ...I'm waiting for another hospital to advise on if i need an op as things are bit worse than initially expected on the scans .... if it's not 1 thing it's another xxxx I'm a tough 1 though!! well I try to cope but gets a bit hard when it's constant bad news xxx

[Stumpy55 in reply to Hidden]

I understand completely kemety. Well I hope everything goes well for you 🤞you certainly have a lot to cope with, so keep strong and positive. 🌹xx

[Hidden in reply to Hidden]

Good!! Get Tough Mel 😍

[Hidden in reply to Hidden]

Oh Dear my LAM Sis 😢❤️

I hope they sort things out.

Let us know how you get on our dear friend 🌹

Do you have Sporadic LAM like me I think or TSC? Well both can give meningioma it seems. Some of the Lammies were talking about it on the forum. They are benign tumours same as the ones we get on the kidneys I imagine. They are as you say in the membranes surrounding the brain and the spinal chord.

They are left alone or treatable anyway.

Thinking of you lots and lots 🌼🌷🌸💖

Fran xxxx

[Hidden in reply to Hidden]

Hi Fran ...sporadic but have never had a collapsed lung which is 1 of the 1st questions they asked when I found out I had lam .... the results of my brain scans are back and are worse than initially thought ...I'm waiting for walton neurosurgeons to advise this hospital on what is the next step for me ....it's either tablets ... treat as outpatient or operation asap ...still getting bad pains in head so will see what they say xxx thanks again for asking about me Fran xxx I hope you, Bea and Aria are all well xxxx

[Hidden in reply to Hidden]

Hi Kemety ❤️

We can have cysts rupturing, coughing blood and small collapses which feel like lung pain etc without a full pneumothorax. They usually resolve by themselves like that time I didn’t move for 48h in case I had to go to some unknown hospital in this foreign country..🙃

I am sorry about the brain scan results. I hope they find a solution for you in Walton 🤞🍀 Hope you get some pain killers that make you feel more comfortable 🤗🤗

I haven’t had the brain scans in my evaluation diagnosis. I think it had to do with age, and they eliminated TSC..can’t remember why so didn’t give me one. They were more focused on my kidneys and abdomen..definitely age related I think 🤔

Tell them to tie up with Nottingham LAM clinic, they see the full picture.

I know you didn’t like Sirolimus but maybe worth another try?? There is a new type out as well..

The American Lammies say those side effects have to do with dosage..like start small..and usually they get better with time..

Thank you for asking after Bea and Aria.

Thinking of you sweetheart, sending you lots and lots of love and courage for all those tests and days to come.

Fran 😍xxxx

[Hidden in reply to Hidden]

Hi Fran this new development apparently is unrelated to my lam and could be since childhood usually but they are now thinking it's more of a new problem which on looking at the scans is worse than initially seen on ct ..as the mri has shown it being larger than first thought ...also something else has narrowed meaning this cud cause

More of an issue in my head .... bit out of it at mo ...I know what I'm trying to say but everything is blurry Fran ...Will keep u in touch when I hear anything. Xxxx💖❤💛thanks my lam sis 😍xxxx

[Hidden in reply to Hidden]

My dear Mel,

You seem in good hands. I understood what you meant. I feel reassured you are being well looked after.

Have a good rest 😴🤗 don’t overdo it..

I am here for you if you need me 💕💐

Fran xxx

[breatheeasy1 in reply to Hidden]

I'm so sorry to hear it's not good news Mel..we're all thinking of you and hoping for the best. Lots of love and hugs honey 💞💕 x Anne x

[Dedalus in reply to Hidden]

You're having a terrible time Mel. I hope they get things sorted soon and you get back on the road to recovery quickly. All best wishes and hugs x