Im worried about my Son!

General
1

I will try to keep this short.

I have alot going on,ME<CFS<FIBRO<LUPUS?VASCULITIS,and failed spine surgery.

Ive been diagnosed,then not diagnosed,with Lupus,i have all the syptoms,but no treatment,i go to see the Rheumy nx wk.

Its my Son,he has all the syptoms of an Autoimmune problem,but hes ignored the syptoms and worked dam hard,going to the gym etc {i didnt know about all this until the Summer of this Yr,he lives in Aussie.He was found fitting really bad in his cab,hes a driller in the mines there,and since then,he has lost his memory,and the Son i onced had isnt the same anymore,its heartbreaking but i dont let him see that of course,i just try to reassure him.

Hes also been diagnosed now with Diabetes,and Kidney problems.

Now when he was in Hospital i spoke to his Doc there,and told him all about my probs,and would they blood test him for any Autoimmune problems,it came back negative,but he has all the syptoms,

Have i given him all this?i feel so bad,and i have 2 Grandchildren 14 and 9 also,i hope they dont too.

Thanks Guys,im just worried,warm hugs everyone x

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Kathy

Our prayers go out to you and your son. Please don't blame yourself, its not known if lupus is hereditary or not. What he's going through may be environmental? Please keep us updated and let us know how your rhemy apt goes. We are here for you : )

Love to you and your family, Trisha

3

Hello Kathy,

I am so sorry about your son and what he's going through and also the worry your having besides and you've got some issues going on yourself.

Kathy 95% of Lupus patients could have inherited it if bloods had been checked because of genes passing on, as mine was inherited and also my sister's besides...which was confirmed by my rheumo and we have other members on here also who have inherited it also.

Blood tests with Lupus Kathys is one total nightmare and as been for alot of members on here...when your bloods come back negative, you could be having a false reading, in other words lupus loves fluctuating the bloods and can either give straight positive readings or false ones, it messes with the our bloods in general.

Kathy i suffer with seizures and you can lose your memory which as happened to me a fare bit over the years but it takes time coming back but it's to what sort of seizures your sons got and to how much damage the electric nodes have done to his brain...because with seizures when your having them the sparks of electric kill brain cells that's why they like to keep them under control with meds to avoid this, having diabetes and also kidney problems in all one go sounds like a large possibility of an autoimmune disease like you think, which Lupus can cause but also REMEMBER PLEASE....that these issues can arise without an autoimmune disease...that goes for any illness some one as.

Don't be hard on yourself because you don't even know 100% with his bloods coming back negative...as people have to go for years constantley being tested till their ANA shows positive to confirm this...or they're showing several amounts of symptoms where rheumo's will confirm it naturally and start treatment.

All my symptoms i had regrding epeilepsey, strokes etc which is in my profile can from the Lupus but they can also happen without being linked to Lupus.

I hope your appointment goes well for you and at the moment don't concern yourself about passing anything on...JUST FULLY SUPPORT YOUR SON.

All my love to you both and i hope is recovery gets better. ((Hugs Terri)) xxx

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Thanks again Terri,yes its just normal isnt it,hes 38 and they are your Babies.He had Grandmals one after the other for 8 days we thought we were going to lose him,he has damage apparantly to his right lobe,hes on alot of meds,and seems to be well balanced at the moment which is good news.

He lives in Aussie which is a pain as i cannott get to see him like i would love to,but my health has put a stop to that,dont think i could manage the 27hr flight,i do see him and my Grandaughters on Skype so that helps.

Its so funny,my Sister who is 7yrs my Junior is starting with the syptoms,only mild but when she is asking me this and that,she is most defonatly starting with something,i wouldnt wish this on my worst enemy.i try to reasure her,and help in any way i can,she is working but finding it hard on her body and mind.

Love and hugs to you too xx

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Hello Kathy,

Sorry i'm late replying.

Well your going to worry as he's your son...i was never blessed which Lupus can cause again but wheather it's down to that 100% i'll never know.

Kathy i suffer with grandmal epilepsy besides Temporal -lobe epeilepsy besides and i'm heavily drugged like your son as i used to have over 18 seizures a day years ago but the right side of my brain is damaged it does'nt work and he's highly drugged so they can save the cells which are working....i am pleased they've balanced is drugs well where he's now under control better.

Well seeing him on skype is better than nothing at all and a 27hr flight would be such alot before i knew i had Lupus...i went to lanzarotte with my hubby got off the plaine my feet and legs was swollen i put up with that through the holiday and back and mouth after my left leg got bigger and tight as i'm only a thin person in the end i had to attend A&E as the pain was terrible, the whole of my left leg was clotted...so even if i could fly i would'nt and go through that again and when they said i'd had Lupus, everything from my past besides the DVT it had caused.

Sounds like your sister as something going on if it's telling on her besides her mind...it was my Dermo who told me to ask my siblings to get testing and kim went who's 3yrs young and all her bloods was positive and also suffering roaseca, she works also in a elderly person's home 6 days and half days a week, she goes mad at me being on plaquenil etc...it's like she's in denial plus i never hear from her, she as a son 22 and won't tell him as she wants him to live is life, she'll know about it if it leds to how nad i am.

I hope your keeping ok in yourself?

All my love Terri xxx

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Terri,im so sorry,hear i am moaning about this and thay,and all what you have to deal with.

And my Sister is simalar,she gives me her syptoms and then just shuts up about it,im here when she needs me.

I had a dvt,in my leg when i had an hysterectomy when i was 28,i had brain fog,cant think the name,its when your organs like knit together,it will come to me once the fog has lifted lol.

i know this sounds crazy,i would risk my life if i could,its my partner,who holds me together,when i make plans that cant be meet.

I have rosea on top of the butterfly,is this a lupus thing.

Im sorry terri my words are on hold i hope you can uderstand this mess.

Take care yeh. Love Kathy xx

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Hello Kathy.

Your not moaning mate it's an actual serious issue and discussion your brought onto the site amd i'm here to help you besides adding about myself knowing what your son's going through besides yourself....as all this is a worry to you and not being by your son is more of a concern.

Acctually kathy that's how i look now at issues about my sister, she did'nt ask to be tested but she went and now she just carries on but i've heard her in the past say she gets tied alot plus she as osteoparosis.

Kathy when your heads better you'll have to tell me what the name is for the knitting together...you've got me puzzled on that one.lol

Well good for your partner standing by you and giving you full support as we all need someone solid, my hubby's the same thank god, otherwise i don't hear from no one and only chat to yourself and other members.

Yes Roscea and Butterfly rash are from the Lupus...i had the butterfly rash in my late 20s had'nt got a clue what it was but it went eventually but my sister's face and neck as always been burning red but she applies steriod cream now to help her.

Kathy not to worry, christ there's many a day i'm like it, half the time i spend editing which does my head in.

Kathy a large hugging emoticonfrom me, all my love to you Terri xxx