a cautionary tale re chronic illness

Graces7

http://www.breakingnews.ie/world/mother-uses-google-to-diagnose-sleep-disorder-that-had-baffled-doctors-for-25-years-629057.html

this is parallel to my experiences with drs over several decades and why i google everything.

let myself down recently by not doing that re the wrist and kwires and am paying for that now.

always need to be in charge of of own health care

Splendour

I know how you feel Graces7,I've had a 'chronic fatigue' illness for over 10 years now and have no choice but to turn to the internet for answers. Am tired of having tests done for them to show up clear although, thanks to information I googled, have had saliva tests done abroad which have showed up problems with my adrenals but those tests are not acknowledged here.
I did have one Doctor who believes in them but I can't afford to attend him.

Hate it when others give out to people with an undiagnosed illness for searching the net for answers.What other choice do we have?!!

Tropheus

Same for me. My diagnosis of Fibromyalgia came from my own research on the net.

However, in the example above, I'm surprised OSA wasn't picked up on earlier as it's no uncommon.

Graces7

Splendour wrote: »

I know how you feel Graces7,I've had a 'chronic fatigue' illness for over 10 years now and have no choice but to turn to the internet for answers. Am tired of having tests done for them to show up clear although, thanks to information I googled, have had saliva tests done abroad which have showed up problems with my adrenals but those tests are not acknowledged here.
I did have one Doctor who believes in them but I can't afford to attend him.

Hate it when others give out to people with an undiagnosed illness for searching the net for answers.What other choice do we have?!![/QUOTE

does not matter to me any what drs think. i take full responsibility for my health care as they will not..

the last time i was in hospital in the uk....saw a psych who said i was depressed and handed out anti depressants. never knew a psych who found any patient normal! that bucket diagnosis of personality disorder etc

saw a gynae who said it was menopausal and prescribed appropriately

saw a rhematologist who opined fibromyalgia and handed out more meds,,

none of them correlated etc.

then the consultant physician mentioned post viral fatigue.

i had had three decades of being said to be mentally ill, then just plain stupid and wilfully bad. even criminal.

had never heard of post viral fatigue then someone on the boat going home said it was m.e., heart sink time.

got home to google...realised i had a new fight on.

got off all meds after realising the medical profession will not change. found a gp who underwrote my files,,,never mentally ill...then i left the country.

it was easier here until kerry. drs accepted i could not cope with keeping appointments and were kind re repeat prescriptions for what little i need

not as easy now, but family have my power of attorney.

i just ignore demands to go to the surgery! only stay on the list because i need my medical card.

i live mostly abed but manage to hoard energy for trading venues to help family feeding so many here and overseas and i enjoy what little i do.

our choice really is the best choice..;)

i have no doubt any psych would have a field day with me but he aint getting a chance..;)

Gatling

It took seven years to be diagnosed with 2 forms of arthritis and and Ankylosing Spondylitis,,

Despite having problems with my major joints since age 12

Graces7

Tropheus wrote: »

Same for me. My diagnosis of Fibromyalgia came from my own research on the net.

However, in the example above, I'm surprised OSA wasn't picked up on earlier as it's no uncommon.

does not surprise me at all. takes a very brave sr in the uk to gainsay another. they are to the uk what priests were here.

kick one and they all limp kind of thing.

i got thrown off list after list which they can do there. a dr has to take you for six weeks then he can dump you. they call it being a peripatetic patient. i was living on an island and they kept putting me on the list of drs on neighbouring islands when there was one plane a week.

because i was deemed not ill just a nuisance and had dared to complain.

it seemed better here but just now...getting older and it gets scary at times.

so now i go to a and e in need..rarely even that

dr google is great

Graces7

Gatling wrote: »

It took seven years to be diagnosed with 2 forms of arthritis and and Ankylosing Spondylitis,,

Despite having problems with my major joints since age 12

(((HUGS)))

Pretzill

My da was diagnosed with parkinson's some years ago - I checked the side affects of one of the pills he'd been on for years through google - it warned of parkinson like symptoms on longterm use - he told his consultant my amateur findings - the consultant took him off those tablets and about four weeks later he showed no sign of parkinsons.

It is always right to question anything about your health - I'd always issue caution on web diagnosis but don't underestimate ever what your own body is telling you.

I had a mystery illness for almost a year - doctors fobbed my symptoms off as anxiety - and yes I was bloody anxious! But I kept going back until eventually I met the right consultant who had time for finding the answer. It was a scary time. But I think most of us know instinctively when something isn't right -

Graces7

Pretzill wrote: »

My da was diagnosed with parkinson's some years ago - I checked the side affects of one of the pills he'd been on for years through google - it warned of parkinson like symptoms on longterm use - he told his consultant my amateur findings - the consultant took him off those tablets and about four weeks later he showed no sign of parkinsons.

It is always right to question anything about your health - I'd always issue caution on web diagnosis but don't underestimate ever what your own body is telling you.

I had a mystery illness for almost a year - doctors fobbed my symptoms off as anxiety - and yes I was bloody anxious! But I kept going back until eventually I met the right consultant who had time for finding the answer. It was a scary time. But I think most of us know instinctively when something isn't right -

indeed yes to your last thoughts.

interesting re parkinsons. one of my friends in the us emailed that her recently retired father had been diagnosed with agoraphobia. i asked her to get him thoroughly checked out physically. he was in the very early stages of parkinsons and it could be controlled with vitamins

yes caution but yes we are more aware than drs think.

the internet is great for support groups.

what irks me is that the generation of drs coming up are even less aware than the previous ones. told the aneasthetist i had m.e and she asked if i knew what the letters stood for.

drs are only human after all

lila1

Pretzill wrote: »

My da was diagnosed with parkinson's some years ago - I checked the side affects of one of the pills he'd been on for years through google - it warned of parkinson like symptoms on longterm use - he told his consultant my amateur findings - the consultant took him off those tablets and about four weeks later he showed no sign of parkinsons.

It is always right to question anything about your health - I'd always issue caution on web diagnosis but don't underestimate ever what your own body is telling you.

I had a mystery illness for almost a year - doctors fobbed my symptoms off as anxiety - and yes I was bloody anxious! But I kept going back until eventually I met the right consultant who had time for finding the answer. It was a scary time. But I think most of us know instinctively when something isn't right -

What was your dad suffering with at the end up. If your father was on this parkinsons medicatipn for years I cant understand a consultantt (especially one who deals with pd patients) taking him off his meds just overnight. A pwp must cut down very slowly on their medication believe me I am talking from experience having taken every med for pd that is on the market. How is your dad now did the pd ever return

Pretzill

lila1 wrote: »

What was your dad suffering with at the end up. If your father was on this parkinsons medicatipn for years I cant understand a consultantt (especially one who deals with pd patients) taking him off his meds just overnight. A pwp must cut down very slowly on their medication believe me I am talking from experience having taken every med for pd that is on the market. How is your dad now did the pd ever return

The meds my dad was on were for vertico not parkinsons - he suffered parkinsons symptoms from a drug called stemital - drug induced parkinsons - is the term. Not everyone would have this reaction to a drug used to treat vestibular syndrome. Sadly he is now my late father because of an unrelated disease.

fabulousdeal

I have Sarcoidosis stage 4 and I'm always using google to check up on new and various symptoms. I'd be lost without it TBH.

_Whimsical_

Pretzill wrote: »

The meds my dad was on were for vertico not parkinsons - he suffered parkinsons symptoms from a drug called stemital - drug induced parkinsons - is the term.

I know someone who became very ill as a result of use of that drug to, did the rounds of neurologists and eventually had a nervous breakdown from the stress of being very ill and getting no answers beyond "something is wrong and we have to wait and see what develops". Once she came off the drug she recovered completely.
Where I hear the name of it now it makes me shudder.

Thank god you were so vigilant for your dad. I am so very sorry for your loss too.