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Author Topic: 5 years undiagnosed  (Read 379 times)

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Offline JerHyman

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5 years undiagnosed
« on: April 01, 2021, 12:39:52 PM »
Iím wondering if there are other people with complete undiagnosed knee pain here. Itís been 5 years now and after 2 arthroscopies and many different physio sessions etc Iím no closer to finding out my problem. Iíve been round the houses with doctors and surgeons. Holistic attempts in the form of Bowen Therapy , electro acupuncture etc have gained nothing. My walking has deteriorated to the point of being housebound.
Iím a 50 yr old male with medial bi-lateral pain/discomfort. I was a keen hillwalker for many years. I first felt twinges in my knees descending a hill in Feb2016 which over the course of the next 5yrs deteriorated. I think Iíve exhausted all avenues and wondered if anyone could offer some hope ! (Recent blood results clear and many mri scans all clear too!)

Offline SuspectDevice

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Re: 5 years undiagnosed
« Reply #1 on: April 09, 2021, 09:11:21 PM »
By bi-lateral, do you mean pain in both knees?
What sort of pain?  Sharp catching?  Constant ache?  Burning?  Stiffness?
Could be what I had - the classic loss of tissue homeostasis as described by Dr Scott Dye (orthopedic surgeon in the U.S. and the answer to my prayers when I read his research).  I've written lots on here & elsewhere on how I beat it.
L Medial menisectomy 2012
PFPS both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2020 - ride 3x/week, swim 2x/week, gym 2x/week, aiming to get back to short triathlons

Offline JerHyman

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Re: 5 years undiagnosed
« Reply #2 on: April 11, 2021, 08:56:00 PM »
I will give that a proper look thanks.
Yes itís both knees and burning/ chronic discomfort in medial aspect. Not cartilage or bursa or mechanical or arthritic. They are trying to send me to pain management rather than find the source and Iím having trouble finding someone who really wants to find the problem.
Appreciate the suggestion.

Offline SuspectDevice

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Re: 5 years undiagnosed
« Reply #3 on: April 12, 2021, 11:59:55 PM »
I will give that a proper look thanks.
Yes itís both knees and burning/ chronic discomfort in medial aspect. Not cartilage or bursa or mechanical or arthritic. They are trying to send me to pain management rather than find the source and Iím having trouble finding someone who really wants to find the problem.
Appreciate the suggestion.

I also went to pain mangt & had 3x PRP injections - waste of time and $'s.

My problem was chronic inflammation of the synovial lining, brought on by over-use (triathlon) ansd the final straw was a LHS medial meniscus surgery (which I doubt could be avoided - bad tear, knee locking).  Produced burning/aching/stiffness in the front of the knee.  The pain moved around a bit, but was mostly anterior/medial.  I even suggested synovitis to one 'expert' who prodded my knee & dis-missed it out of hand.  But he was wrong.

I had to work out the problem for myself from Dr Dyes work & take the solution to my local doctor = 5/6 years of Hell finally resolved after 5-6 months on Celebrex to knock out the inflam. then a gradual build up of muscle strengthening.  There were ups and downs over that 5-6mths, but gradually I moved forward.
L Medial menisectomy 2012
PFPS both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2020 - ride 3x/week, swim 2x/week, gym 2x/week, aiming to get back to short triathlons

Offline JerHyman

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Re: 5 years undiagnosed
« Reply #4 on: April 17, 2021, 11:08:34 AM »
Thatís great that you could finally find an answer. After 2 exploratory ops they have assured me there are no signs of arthritis or inflammation!! This apparently has been also proven by several different blood tests.
At the moment Iím on Eterocoxib which I believe is very similar to Celebrex !?
Iím also trialing RSO paste to what the effects may be although itís purely a shot in the dark.
Iíve spent months with a great physio who has told me more than any knee surgeon ever has but he has also said in reality that itís something heís never come across in 20 years of practice.
I know the solution is there, itís just finding someone who WANTS to find out too. Itís not in reality practical or money spinning  for knee specialists ! To much effort I feel.

Offline SuspectDevice

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Re: 5 years undiagnosed
« Reply #5 on: April 19, 2021, 10:06:03 AM »
Thatís great that you could finally find an answer. After 2 exploratory ops they have assured me there are no signs of arthritis or inflammation!! This apparently has been also proven by several different blood tests.
At the moment Iím on Eterocoxib which I believe is very similar to Celebrex !?
Iím also trialing RSO paste to what the effects may be although itís purely a shot in the dark.
Iíve spent months with a great physio who has told me more than any knee surgeon ever has but he has also said in reality that itís something heís never come across in 20 years of practice.
I know the solution is there, itís just finding someone who WANTS to find out too. Itís not in reality practical or money spinning  for knee specialists ! To much effort I feel.

Yup, patience and doing your own research is the key, not rushing into surgery.
L Medial menisectomy 2012
PFPS both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2020 - ride 3x/week, swim 2x/week, gym 2x/week, aiming to get back to short triathlons

Offline SuspectDevice

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Re: 5 years undiagnosed
« Reply #6 on: April 20, 2021, 10:29:10 PM »
Iím wondering if there are other people with complete undiagnosed knee pain here. Itís been 5 years now and after 2 arthroscopies and many different physio sessions etc Iím no closer to finding out my problem. Iíve been round the houses with doctors and surgeons. Holistic attempts in the form of Bowen Therapy , electro acupuncture etc have gained nothing. My walking has deteriorated to the point of being housebound.
Iím a 50 yr old male with medial bi-lateral pain/discomfort. I was a keen hillwalker for many years. I first felt twinges in my knees descending a hill in Feb2016 which over the course of the next 5yrs deteriorated. I think Iíve exhausted all avenues and wondered if anyone could offer some hope ! (Recent blood results clear and many mri scans all clear too!)

As someone who has been on a similar journey to you, back in my darkest days I started this thread on a triathlon forum to try and get my head around it all....and for a bit of catharsis during my frustration.

Might be of some help to you?

https://forums.transitions.org.au/topic/68825-stay-that-knife-surgeon-knee-pain/?tab=comments#comment-1149079

cheers
L Medial menisectomy 2012
PFPS both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2020 - ride 3x/week, swim 2x/week, gym 2x/week, aiming to get back to short triathlons

Offline JerHyman

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Re: 5 years undiagnosed
« Reply #7 on: April 21, 2021, 05:48:28 PM »
Thankyou for your reply. The thread has been very helpful and it makes a massive difference knowing you are not alone.
Mentally the most challenging 5 years of my life and although every day is a uphill battle, your link has given me some hope or at least some understanding of possible causes and solutions. Much appreciated