Waiting to be diagnosed...

Hiya all..

I'm only 20 years old and been extremely ill since October 2015 and signed off work, admitted to hospital for a week and was also wheelchair bound for 3 weeks with both of my feet an legs not working at all!

My GP and th hospital Drs all thought I had nerve damage so was taking up to 17 tablets a day to treat something I never had! I have been on all the pain meds there is an last resort was morphone mixed with codine when I was took to hospital again only last week with electric shocks in my head!

I suffer 24/7 every single day which is draining the life out of me, I have also suffered with an under active thyroid since I was 16 which just makes matters worse with fatigue. My symptoms are pins and needles in feet, legs an hands, strong burning sensation in hands an fingers, electric shocks, leg spasms, my left ankle is completely swollen which I can't put any weight on or walk at all on that foot, pins and needles in lips, dry mouth, swollen tounge, left shoulder feels dislocated, constant back pain an strong pain behind my knees, and both feet turn dead blue once they are Cold!

For the past 2 weeks now I have been getting the same rash in the same place on my left wrist on both sides, my legs an left ankle, the rashes do come an go but are very very itchy.

The hospital an gp make me feel like it's all in my head an I haven't had no support of them what's so ever! My family is now unfortunately having to pay to see a private dr which is disgusting as we pay tax to get these services for free!

I have saw a nurologist in January which we thought maybe I have MS but after a 10 minute conversation he Dismissed me, I have now recieved a letter of my nurologist who now thinks I have lupus an cfs aswell..

My blood results are constantly getting worse with my ana antibodies is 100, ESR has now gone up to 32 an my white blood cells not working 100%...

Sorry for the long story but I'm just wondering if there is anyone else out there who has suffered an still is with this illness!!

X

[Purpletop]

Oh my goodness, you've been so poorly! The feet getting blue when you're cold is a sign of Raynaud's disease which is something to do with the inability to dilate blood vessels in your extremities. The pins and needles can also be a symptom of vasoconstriction, your blood vessels not able to dilate properly so not enough blood reaches everywhere, hence the tingling.

As to the cause of all this, I don't know. It could be lupus but this sounds a lot more than that. hopefully your rheumatologist will be able to do all the tests and send you to the right specialists.

I know you're at the end of your tether but at least now you're about to see a rheumy you'll at least be thoroughly investigated. And that's a step in the right direction.

As for whether we are still suffering with lupus, oh yes. This thing never goes away, once it starts. But with treatment it gets under some control and you'd be able to live a fairly acceptable life.

I'll let younger members to respond to you, they'll have a better view of how lupus is managed at your age and what they're able to do or not do while under treatment.

All the best.

[Hidden in reply to Purpletop]

Thank you for commenting back, it has been a struggle but just dealing with the pain in my own way now.

With the vasconstriction it causes high blood pressure, iv never had high blood pressure always normal but was only low when I was in hospital.

Just hoping to get a proper diagnosis when I finally see my rumotologist x

[Purpletop in reply to Hidden]

From experience, when you see the rheumy try not to overwhelm him with a jumbled list of all possible symptoms. I'd just categorise all the symptoms and go through the categories, e.g. Circulation: pins and needles, blue toes when cold, etc. Joints: shoulder pain, pain behind knee, swollen ankle.

And make sure you have the details at hand, such as how long that particular symptom had bothered you, when did it start, do you know what triggered it (maybe drug, cold, weather, etc), what's the pain intensity on a scale of 1 to 10, anything that you found that improves it (paracetamol, ibuprofen, hot water bottle) etc.

Also bring with you a list of what scans and tests you've had to date and a copy of your latest blood tests, if you have any. And copies of the clinical letters you've had from the various doctors and discharge letters from the hospital. You can get copies from the GP. Offer them but let him confirm he wants them.

Good luck!

[Hidden in reply to Purpletop]

That's great thank you. I have already printed Off all my bloods an have a whole page of my symptoms haha

X

[baba]

There is a thyroid forum on health unlocked also.

healthunlocked.com/thyroiduk

And Lupus uk website has information on Lupus

lupusuk.org.uk/

[Patricia2015]

Poor you. I think you might have celebral vasculitis with your neurological problems. Vasculitis could come secundairy with lupus or without.

Believe in your self and what your body tells you.

I've met several terrible doctors who tried to convince me that my physical problems originated in my head. After searchinh second, third and even fourth opinions they proved to be wrong. Unfortunately many doctors are afraid to admit they don't know what is wrong with you and rather say it is all in your head. Everyone on this forum has been there.

I wish you strenght and a fighter spirit to handle your disabling problems and doctors.

[Paul_Howard Partner LUPUS UK]

Hi Leanne21bull,

I'm sorry to hear that you have been struggling with so many symptoms and, as of yet, still don't have a diagnosis. Do you have an appointment to see a rheumatologist? Purpletop has given you some great advice for your appointment. It can really help to be organised and to plan a few questions that you would like to be answered by the end of the appointment. Taking in details that you have written down can help you to remember things.

If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/contact-us/