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How many years = diagnosis?

Mar 20, 2017 4:18 PM

Hi Guys,
I'm interested to get a general idea of how many years people have waited for a conclusive diagnosis?
Thanks in advance 😀

Mar 20, 2017 4:25 PM

I was lucky, I got dx right away. I told my doc I was in a lot of pain. She sent me to a rheumatologist and I was dx with fibro. That particular rheumatologist didn't treat fibro so I had to find one that did.

Mar 20, 2017 4:44 PM

Mine was quick. Just a matter of months.

Mar 20, 2017 5:24 PM

Well I was diagnosed with "growing pains" when I was 12. When I was 33 another doctor started the process to see what was going on as I still had growing pains. 12 years after that I got a diagnosis. Am 57 now.

Mar 20, 2017 7:45 PM

About 10 years of waiting and finally got on med that helps 2 years ago

Mar 20, 2017 8:56 PM

43 years. I have been dislocating my shoulders since I was a baby. I have hEDS

Mar 21, 2017 7:08 AM

I picked up tinnitus in my late teens which was DX 6 months after I first noticed the constant ringing, obviously I had a battery of tests and a CT scan before it was DX. I've been lucky that (touching wood) it hasn't caused me any hearing loss but in crowds I find it very difficult to hear what someone is saying to me because I can't distinguish what they are saying with all the other noise going on and it's only got worse and actually causes me to go into sensory overload especially​ if it's noisy and crowded, I start to panic or shutdown 🙁
I've had vertigo on and off thro the years and been to ENT many times, some say there's nothing wrong, some say it's miniaires​ and some don't know and say I have to live with it!!! So now I try to live with it best I can and when it's bad I take anti sickness tablets for it 🤢
Trigeminal neuralgia was kinda DX pretty quickly with how the pain progressed, the doctors put me on gabapentine then pregabline and carbomezapine without actually telling me I they'd DX until a bit later when I was admitted to hospital because of the pain and me almost flushing sodium out of my body 🚑
Now it's taken 6 months of me telling my doctor it's more than TN going on in my body, my joints and muscles hurting especially my knees, lower back and neck and shoulders with other little bits as well. My last 2 blood tests have shown raised inflammation but RA inflammation came back clear so that is why she referred me to the rheumatologist! Within about 10 minutes he'd DX fibromyalgia then to top it off he said wear and tear in my knees and the left one is pretty bad and that I could have an ulcer and gallstones which the industrial amounts of pain meds I'm on could be covering them up 🏥

Mar 21, 2017 1:39 PM

10 years going and no diagnosis...

Mar 21, 2017 6:11 PM

Thank you all for taking the time to share your experiences of seeking DX. Glad for those whom it was arrived at relatively quickly. Sad for those where it has taken so long and some still searching but inspired at the same time that you have kept up the search against the odds. That demonstrates your incredible determination. Hope we will get constructive answers eventually.

Mar 22, 2017 8:42 AM

Hi, I've had fibromyalgia and backaches for many years. I'm 66 now. For the last year I have had continuing sciatica down my right side from my hip to my foot. Oxycotin has given me relief. I went to my doctor who referred me to a neurosurgeon. He wrote down my history, charged me $250 and referred me to a rheumatoid specialist.My rheumatoid factor came back at 150. After
waiting 3 months to see him (and paying $240 ) he said I had no rheumatoid arthritis but commented that I had signs of Parkinson's disease and I should go to a neurologist. My Doctor phoned a few neurologist and was told the waiting list is 2 years.
So, I'm in pain, walk with a cane, and allow pain killers to control my life and I am fed up. The first specialist did order a MRI that shows compressed areas in my spine and protruding disks, but after 3 phone calls in the last week nobody has rung me back. I feel like I have been fobbed off to the too hard basket.

Mar 22, 2017 9:45 AM

I was in pain for about 10 yrs before being diagnosed.

Mar 22, 2017 7:44 PM

I was about 4 years during which time all my bloodwork came back fine. Until one day when I was having a serious flare my bloodwork finally confirmed my diagnosis.

Mar 25, 2017 7:27 AM

Am.so sorry you are struggling so with doctors. I hope that you do find one who is understanding and most important knowledgeable.

Mar 25, 2017 11:55 AM

It took me about 7 years to get diagnosed, but I am pretty young (15) so it's been a long time!

Mar 25, 2017 3:58 PM

2.5 years I finally got diagnosed with lupus. A year in and now they're telling me it's​ not. It's mixed connective tissue disease. It can take many years more often than not.

Mar 29, 2017 10:47 AM

waiting for 2yrs now. doing every tests to rule things out. but im so exhausted.

May 02, 2017 11:33 PM

Thanks again for all your replies. After ten years, yesterday led me to a diagnosis and for that I'm grateful.

May 03, 2017 2:48 AM

Its take a 1.5 year for find the exact conclusion .....and it was came with the ostoid ostioma ....after that i was pass though sergery .....and now i am fine ...😊

May 03, 2017 6:19 AM

Mine took a while. I "self diagnosed" myself because it was pain from my scoliosis but when I had to have my 2nd parathyroid surgery and they wanted me off my thyroid meds to do it I begged them not to take me off the meds cuz of the debilitating fatigue and exhaustion. That's when they said I should have a sleep study and they found out I do t ever go into R.E.M. sleep. It started from there and then I went to a rheumatologist and found out. One doc kept doing blood tests and kept saying they needed to up my thyroid meds and that was why I was so tired. I ended up not being able to walk so my husband took me to Mayo and they said I was on WAY too much thyroid medicine. It was a whole process for me, like so many others. I think it might have taken a couple of years.

May 03, 2017 12:03 PM

For me it is hard to say because of so many medical issues I have. Ones with difinitive testing results by blood, scans (X-ray, MRI, CT, MRA, PET... Etc) if you can get the doctor to do them then quickly diagnosed. But like I just said. IF. You can get them to do them. Others like fibro. It is an elimination of other posabilities and can lead to wrong diagnosis such as CRPS or some other rare auto immune dieseases.

I self diagnosed a few of my issues and my wife and doctors did not listen to me for a long time. Blowing me off saying no way. Finially begging and pleading. They started the scans and I was right. And we started the better course of treatment.

Sometimes you got to fight. And if need be switch doctors.

Hope this helps.

May 03, 2017 3:11 PM

About 20 years. I was complaining about pain from about 6 years old and it was mostly written off as "growing pains", but then I hit adulthood and the pain never stopped. I only got diagnosed about a year ago with fibromyalgia/central sensitisation and I'm 28 now. :/

May 03, 2017 3:52 PM

Just over 5 years but most likely 20+ just depends on if you count the from the time I was 13 or so and complained about my back well sense now and was always told it was my weight.

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