Can I have a hand hold

[user1497873278]

Been in hospital a few days feeling very ill, they don’t know what’s wrong, have been ill for last six weeks, went to my doctor after my husband complained as I was not getting anywhere calling them. She called emergency ambulance, they thought I had sepsis, had bloods X-ray they sent me home, and I have carried on like this,terrible neck shoulder pain head pressure ringing in ears, severe dizziness, no appetite for 6 weeks, temperature, also have problems with feet can’t sit as they go red blue and are painful, originally though feet was down to slipped disc but seems not, feel like everything is connected but I’m getting passed around one says one thing then see someone else, I feel like I have really bad infection, but bloods clear, just raised inflammation, anyone have any reassurance, I’m thinking all sorts, had brain mri that seems ok, chest X-ray, I getting so anxious now as it feels like I can’t remember what it feels like to feel well

Hi OP, I was just thinking of you, wanted to say hi and let you know we are all still out here with a virtual hand hold while they carry on their testing. Hang in there.

Hand hold from me too.....
An illness of the nervous system sounds like a close match...

Just popping on to keep hand holding. Hope they get you some answers soon ❤

I am so sorry that you are suffering like this, and, for so long. I pray you will get a diagnosis quickly and they can get you on the right medication X

Thank you all so much

Keeping on keeping on is very impressive OP. Thinking of you.

Thank you all I’m struggling means so much just don’t have the energy to reply much but I read them all your all so kind taking the time and all advice is being noted thank you again

Another one here offering a handhold

It might be worth giving the vasculitis helpline a call - they are so knowledgeable and helpful, they have a fb group also where you can ask questions, it's listed here www.vasculitis.org.uk

If it is vasculitis, you need specialist input, not just from a rheum as depending what type, they've probably never even seen it before

Still here lovely. Hope the football hasn't depressed you even further. My OH has now begun the countdown to the world cup, heaven help us! Don't worry about replying if you aren't feeling up to it, keep your strength for the important stuff

No pickingdaises it hasn’t bothered me, but mostly male household and they were all close to hysterical 😩 the latest is had PET scan at home now, don’t think anything has shown up on any of the scans, but have to wait to see the rheumatologist, still feel ill, temperature, aching muscles, managing some food and the drinks they sent me home with, just about. So laying around can’t do anything as just makes me feel worse, not that I feel ok laying but feel less dizzy, my doctor called me yesterday and said if I get worse I have to go back to hospital, but even she admitted they had done tons of tests. I feel totally lost, and exhausted from trying to figure it out, thought that the fact I can’t sit without my feet turning blue, might narrow it done a bit as it’s not normal but couldn’t seem to get anywhere. Leaves you feeling like it has to get to a very serious situation before they can either treat you, or figure it out, thank you all for the one support, it’s meant so much

It must be lovely to be home, but at the same I'm so sorry you still haven't had an answer! I have a friend whose feet go blue like that, but she has chronic fatigue syndrome, so the other symptoms are different. But maybe it is an autoimmunity problem too? Sounds like you're going to have to be be prepared to fight hard for a solution, don't let them give up on you xx

Glad you’re home but sad you’re no closer to knowing the cause. Fingers crossed that the rheumatologist has some ideas.

In the meantime, thinking of you 💐

Glad you are joke, but sad for you that you are home without answers.

I hope your rheum has done all the immunology panels.
It may be an autoimmune illness in a bad flare.

Hope u can rest

X

Thank you all

I do feel for you as I was in the same position , sent home feeling as bad , if not worse than I went in . We went private in the end as it was that or die . 💐

Floralnomad, do you mind me asking what you had, and wether the hospital did relevant tests and still didn’t diagnose, or was it a case of them not testing you, and the private doctor doing so.

I had Addison’s disease , I was in and out of hospital for 4 months , on my last admission ( blue lighted with a bp of 45/0 ) I was diagnosed with colitis . I knew by this point I had Addisons as my mum has it and we knew all the symptoms but the inpatient team would not refer me to an endocrinologist as I had already been referred by my GP . I was discharged in much the same state as I had been admitted ( vomiting and with a very low bp) after 5 days with a referral for a colonoscopy and endoscopy ! We then decided to see a private endo who confirmed my diagnosis , organised the definitive tests and supplied the correct drugs . I should say that my GP was absolutely brilliant throughout but he , like me was failed by hospital services . It was an interesting 6 months as the tests I had also showed up that I had a chronic lung condition , asthma and polycythaemia .

It really does sound like you have some kind of vasculitis and if you can afford it it may well be worth trying to see someone privately who specialises in that area . In my experience certain parts of the NHS are not fit for purpose .

Floralnomad just wanted to let you know that after being assured everything was normal and then sent home still ill, but being told we have done all tests we can. Well today I got a print out of my rheumatologist appointment and she could see how ill I looked this was last week, husband having to hold me up when I stand. Print out says low cortisol 170nmol/L so goggled it and even though I don’t know what time it was taken all my bloods were always mornings this seems to be low, if not dangerously low considering I get worse as day goes on or if I even try to shower, do you have any experience of this, I seem to have exact symptoms that seem to be getting worse, terribly weak and feel sick and unable to eat much plus other symptoms, I tried to call my doctor but no one available as usual have to try again tomorrow, so exhausted by this

Floralnomad, sorry I have just read read some of your messages you sent me, and it seems, very much like me, I’m having really bad stomach problems if I can eat it’s pains and acid then I feel sick, I’m guessing you had similar as you mentioned them thinking colitis

Did you have the synacthen test when you were an in -patient?
Sorry you're still feeling crap OP. You may have to get a GP private referral to an endocrinologist to rule out Addisons. IME GPs are happy to do private referrals.

So sorry to read that you are still Struggling.
If you ha e found something on your blood results which maybe shed some Light then run with it.

Have you it contact with the consultant on the. Lood test request form? I would. Follow that route, because from past experience GPS will struggle eith the specialist nature of some of head results.
I had my sons gp put his hands in the air and say oooo no too specialost for me

My DH has vasculitis.

From his experience these auto immune disorders can take bloody ages to diagnose and work out. They often seem similar to many other conditions.

I remember how desperate we were when we didn't know what wrong so I really feel for you. I really hope you get some answers soon and that you can start to recover.

I2b2 no I haven’t had that test. I have been referred to endocrinologist after complaining about this low result, so I will struggle on, it’s really hard you know something is very wrong but they just can’t seem to stay with it, it’s a case of we’ve done this and this, so of you go.CimCardasian vasculitis is what I was told I had after a positive P ANCA test then they changed their minds, seems with vasculitis until it gets critical you are unlikely to get a diagnosis, how was your husband diagnosed and how was he before that if you don’t mind me asking. Thank you all for replying, so kind of you