Lost...

[murphylotte]

I spoke to my specialist yesterday because i have a very bad infection and this is the 2 one this year.

I wanted to know..

is our immunesystem weaker than others?

Now she Said NO! All symptoms that’s described on ghic, is symptoms on other autoimmune ilnesses. And she told me this is the reason why they follow me once every year, because they check me for Lupus ore other nasty stuff.

She is happy to help me find the other ilness, so when im well again i can start getting blodtests.

How many of you, have aps symptoms and also another autoimmune ilness?

[MaryF Administrator]

HI, I think once you have any autoimmune disease you are likely to possibly get more, and I think we can have reactions and flares, with regard to infections and viruses, which can be worse for us than perhaps for somebody who does not have these issues.

I know for me, that until I sorted out my Thyroid, and this involved ordering my own far more detailed tests, I got more infections that I do now, I also make sure that my vitamin D, B12, Ferritin and Folate is all at a good level, (your GP can help you with some of this), however in terms of your Thyroid, I know the testing is scanty, usually only the TSH is done, so better to try out a more detailed approach if you have access to private testing companies, such as we do here in the UK. I also gave up gluten many years ago, which has also helped me along the way.

Mary F

[murphylotte in reply to MaryF]

MaryF, i will keep this in mind and ask for the tests.

I might Sound a bit overreacting but im just a bit fed up now with this sick 😑

[MaryF Administrator in reply to murphylotte]

Yes, as a guideline, this is the sort of panel, for your Thyroid and basic things, that is good to use: medichecks.com/thyroid-func... Of course your consultant will also do other tests or indeed your GP, but so often the Thyroid and D, Folate, Ferritin and B12 etc is overlooked in detail. So worth doing just to make sure nothing is making you more ill than perhaps the usual winter viruses. MaryF

[murphylotte in reply to MaryF]

Thank you MaryF 😃

[HollyHeski Administrator]

Not very helpful when you are feeling so rough!!

Hopefully once this infection is over they will do the blood tests?

I am triple positive APS and have secondary sjrogens, also other complaints - when one flares or I get a virus I don't seem to cope at all. Even a common cold can take ages to recover even sometimes putting me in hospital when my blood goes hay wire.

You mentioned recently that on top of not feeling well, your looking after your family and working - please try and give yourself space especially while you have this infection.

Make sure you go back to your specialist and get everything else checked out.

Look after yourself xx

[murphylotte in reply to HollyHeski]

Thank you HollyHeski ❤️

I went hospital last year because i had tonsilitis 😳

The medication i get now make me dissy and stoned 😑 the only thing i can tell you is my life happen slow now wich meen my family has my attention.

My girl was so exited last evening cos we could play a game... ended up playing all our games 😆👌

Im not sad and cry all the time but i do get frustrated and go online cos now i can crack the code of aps and get us all well 🙄🙈

The thing is... i do fell misunderstod by the gp’s a lot 😔

[KellyInTexas Administrator in reply to murphylotte]

Hello,

I’m sorry to hear all this ...

I’m glad you were able to enjoy the weekend evening with your daughter- exactly how it should be. Enjoy those times. That is one of the secrets to staying mentally and physically health with APS, I think.

( Turning off the world and getting in cozy pajamas with your family in front of the fire place with your family with a nice dinner, cup of tea, games, movie night in...)

I just wanted to remind you ( I’m sure you know this) Richard Cervera in Spain is a world famous specialist in APS. I believe he is in Barcelona. Have you seen him? He trained with Professor Hughes in London, I believe.

[murphylotte in reply to KellyInTexas]

Thank you KellyInTexas ❤️

I did enjoy with my girl 😍

I live in Denmark, not sure i can cope with travel at the minute.

Had operation today on the infection on my back... hopefully i will get back to normal quick 🙏

[KellyInTexas Administrator in reply to murphylotte]

Lotte! I wondered why a Danish woman was living in Spain!

For some reason I thought you lived in Spain.

My apologies.

So you had a weekend of ,” Hygge” if I spelled that right.

I used to live ( many years ago in 1986/1987 ) in Finland as a student. I did visit Copenhagen and the small sea side town where Hamlets castle is... Then a few years ago in 2012 we hosted a Danish exchange student. She comes back to visit about every two or three years. She is from Rundbjorg. ( tiny village.)

[KellyInTexas Administrator in reply to KellyInTexas]

I hope your back heals quickly... what was wrong? If you are on antibiotics- be very careful with INR/ if on warfarin

[murphylotte in reply to KellyInTexas]

I had a nasty infection in a lump... this antibiotic made me High and my inr was low so had to do injections a few days.

Now hopefully im back to normal now just with marevan 🙂👌

[murphylotte in reply to KellyInTexas]

Maybe my spelling remind you of spanish 😂

No worries... im only happy to hear about all the aps specialists. Have wondered if i should go germany, cos the have specialists from ghic.

But i must waite a bit...

And yes, lost of hygge yesterday, my girl kept saying her belly was funny and tickily 😂😂😍

Ahhh you know a bit of Denmark then 👏😃

I would love to go Texas or America one day... maybe i will happen one day 😃