Hi! Guys

[Reetsky]

Thought I'd share my story with you. It can take a long time to come to terms with this illness and the trauma you go through to get to the other side.

A year ago I felt unwell. Slow build up of real nagging pain beginning in my hands, going into my wrists and then moving to my lower legs plus lethargy. After about a month of this i went to bed one night, lay down and got right back up again with incredible pain in my lower jaw; it was like a searing burning heat. Relative took me to A&E (ER) where doc diagnosed severe ear infection, prescribed antibiotic, ibuprofen and sent me home to rest.

A week later, didn't feel better so made emergency apt with GP. GP was young locum who checked ear, said I hadn't given meds long enough to work and should go home to rest. Duly did this but week later still felt really unwell so made another emergency apt with GP who then diagnosed Mumps! Gave me ibuprofen and co-codamol and said rest some more. Duly took these tablets and was violently sick; don't take any more. So, two-and-half weeks later, by now unable to eat (no appetite) or drink, I phone to make another emergency apt but was told by receptionist that she would call back. GP calls back instead for phone consultation. "What can I do for you ( - didn't he read my File?). So I explain, as above. "What colour is your urine" he asks? Like tea says I. Not eating or drinking, too weak to try now. " ok says he, take a teaspoonful of water every 15 minutes". Did he not hear me say I couldn't manage to drink. Anyway, I take one teaspoonful of water. It tastes unpleasant so don't manage any more.

Couple of days later I ask relative to take me back to hospital where I am instantly put on a saline drip (15 bags full over 2/3 days), am admitted to high dependency ward for tests and assessment, then moved to intensive care where they finally realise that my lungs are bleeding and kidneys failing. Go on to life support (ventilator and feeding tube etc) and family are called in as I may not make it through the night. Obviously did ! After one week I am moved to the renal unit at another hospital. Dialysis required to remove the 15 bags of saline that the kidneys can no longer cope with (2 litres per day removed), blood transfusion (haemaglobin too low), kidney core biopsy taken then moved to a third hospital for blood transfusions and x-rays and plasma exchange to clean out the ANCAs attacking my body. Taken back to Renal Unit to have appropriate meds prescribed and observed for effects.

3 weeks ill at home, 6 weeks in hospital then discharged back home. Attended renal clin every week for 5 months, now every 3 weeks. Been taking cyclophosphamide but had to be stopped due to adverse effects. Prescribed another moefitil med, same again. Now on moefitil (low dose) but stopped again due to WBC count and haemaglobin being ridiculously low. And so it goes on....

I would be dead by now if I had depended on my GPs care (or lack of it!) and not taken matters into my own hands by going back to A&E.

but, I'm still here, still standing and getting on with life best I can. Nice to meet you all.

[mishb]

Wow, Reetsky, I'm so glad you got back to the hospital.

Going undiagnosed is basically part of this package that we have.
It is scary that there are so many stories just like this........surely doctors can all work it out by now, but unfortunately it is not so

Are you still going to the same GP for your normal medical requirements? I bet he/she is doing things differently now.

[Alysia]

Hi Reetsky.
if you are a weggie this is the best place to be in
you have being through hell and back. very scary
you were lucky to survive it.
the negligence of the docs makes me so angry
I think you should find yourself good WG doc
welcome.

[Pete]

Hello Reetsky,

Welcome to the forum. Hope you get the information you need. I second Alysia's advice about getting a good weg's doc. They're invaluable when you're trying to sort out symptoms (as in do I have the flu or is this the beginning of a flare??).

Also, where are you from in Scotland. My grandfather emigrated to the US in 1902 from Dundee.

Good luck and better health!

[Reetsky]

Hi M

Still with same docs at moment, only just recovered enough to think about changing. However, my meds are free so it costs GP practice a fortune. There is some justice there after all.

[Reetsky]

My Consultant at hospital is very good. It's the potential flare diagnosed as 'mumps' that will concern me.

[Reetsky]

I'm living in Hamilton, South Lanarkshire but my Son went to university in Dundee. Thanks everybody for quickest welcome and responses. It's good to feel supported.

[Reetsky]

Yesterday is history, Tomorrow is a mystery, Today is a gift. That's why it's called the present. - ​that Chinese fella Confu..........

[HopeinTN]

Welcome and glad you found us!

[annekat]

Welcome, again. Your story sounds so typical and very different at the same time. So many of us have had to take matters into our own hands to get a diagnosis and save our lives. So many convolutions to go through to find out what we really have! Mine started with an ear infection, too, followed by 2.5 years of ear and sinus problems with intermittent joint pain before it went into my lungs and became bad enough that I was diagnosed, in a roundabout way. If I hadn't already heard of Wegs and found this forum, I would not have know what to look for or ask for. Even then, I had to argue with the doc in order to get taken seriously. It's fun to prove doctors wrong sometimes.