Is it or isn't it? Can you help please?

Hi everyone,I did post here a few months ago on behalf of my daughter,who like so many have had a nightmare trying to get a dxs.

Then a few months ago. She was finally told that she had severe systemic lupus,well now she is being told that she is being treated for lupus but they don't think she had it,no one can find the bloods etc that she was dxd with,and now she has blood tests each week or couple of weeks although she had high inflammatory markers,she had NO lupus markers etc.

Her heart consultant referred her to a renal consultant who was almost positive she had a severe form of vasculitis,he referred her to neurologist who agreed she needed an mri body scan with dye ,although she has scarring on her heart valves and kidneys,the couldn't say it was vasculitis.

She had swelling on the brain and spinal cord that finally went down with steroid infusions.

That is only really part of her story. She suffers from asthma,allergies/anaphalaxis,severe skin sores all over ,heart probs bowel probs vision problems/tunnel vision,severe pain and fatigue , sinus/ear infections,headaches , jaw pain,water retention,kidney infections,the list goes on ,bless her.

She is only 27 ,works fulltime,has twin 3 year olds and is finally getting fed up with things.

Like many,she has been told its, MS ,ME, vasculitis ,lupus, then discoid lupus and ms,now maybe still could be vasculitis,no one wants to commit themselves,now all the drugs she is on are causing het to have constant infections, she is thinking about stopping het immunesuppresants,what do. youcausg cons

7 Replies

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  • I can understand only too well why you are worried about her.

    Can you send me a private message to say where she is beingtreatred and by whom.

    This is clearly a complex case and she needs to be treated by the best.

    Ver best wishes

    John

  • Oh sorry do apologise I didn't send this to your pm.Sandy.

  • I'm sorry to hear that she's having such a hard time. I'm glad that John & Susan got in touch, they are the best ones to contact.

    sending you both hugs, sandra

  • Hi Sandra,thank you for your reply,John has already given me valuable advice/info to pass on to my daughter,re hospitals etc,really helpful.

    It spurred my daughter on to ask to be referred to a specialist lupus/vasculitis clinic.

    She is just waiting from information from her nurse.

    Thank you again, take care,Sandrae.

  • Dear Nanny,

    Sorry to hear, about your daughter, and all of her 'problems'. Hopefully, once 'they' actually find out what's wrong, with her, and start the right medication, she will quickly 'get better'. I have had 'uncatagorised' vasculitis, for about fifteen years now, and am on Pred. Axa, and a whole host of other stuff. I am also now on dialysis, three times a week.

    I don't know if any of this helps, hope so, best wishe to you both.

    AndrewT

  • Hi Andrew ,thank you so much for your. message,can I ask how it came that you recieved a diagnosis of undifferenciated(sorry spelling?) Vasculitis,and did this make it more difficult for you to get adaquete treatment etc?

    I can only imagine how difficult dialysis must be,bless you,I take it that it is due to the vasculitis ?

    I never realised how autoimmune diseases can be so serious.

    My daughter has in the past had a lot of kidney infections,but never serious,she had a lot of heart issues,palpitations,chest pain,heart murmor,very low blood pressure,also occasions where 9 times in a year she would have stomach pains,need to lie down as she broke out into serious sweats,or would pass out,with 25 mins she would feel better but the fatigue it caused lasted for days.As a child she had severe asthma,a horrendous cough,ear and sinus infections,bowel problems,also about a year ago she started to suffer with what appeared to be anaphalaxis,face lips,throat etc would swell for no apparent reason,maybe foods but they are not sure,her list of symptoms goes on,poor thing.

    I am keen to hear about your dxs of undifferentciated vasculitis? Only if you don't mind shareing that with me.

    Take care,Sandy.

  • she needs to go and see her dr I kept having infections my dr as put me on trimoxazole forte 960mg tablets 3 times a wk and I have not had any infections while on these I am not saying they will work just an option

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