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Author Topic: JHS, MRI anxiety and thanks to all the knee geeks :)  (Read 4892 times)

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Offline Phantom_cw

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JHS, MRI anxiety and thanks to all the knee geeks :)
« on: March 04, 2013, 11:05:01 AM »
Arlrighty then I thought it was about time for an update...

I finally got an appointment with a rheumatologist after fighting with the GP's for two years and it only took 8 months on the waiting list to get there  ??? but get there I did in January. I never met my consultant but her registrar (sp?) gave me a working diagnosis of Joint Hypermobility Syndrome. I'm calling it a working diagnosis as the registrar gave me some literature on Joint Hypermobility and agrees that most of my joints are more flexible than what is considered normal. She asked me to go though the Beighton Score test, though she tested my thumbs the wrong way lol  :D She sent me for some blood tests after asking me a bunch of questions then I was sent on my way. Only through my own research did I feel comfortable with  understanding JHS as other sypmtoms weren't explained very well in the leaflet I was given, nor was I given any explanation by the registrar. Since then my GP says there are no inflammation markers and everything has come back fine though my vit D was a little low. I am now assuming that at my next appointment with the rheumy in May will see this diagnosis confirmed. A big upside to the appointment was getting some MRI's on my knees ordered.

    I am going for my MRI's tomorrow and I have to admit I'm a bit excited or rather hopeful. I think it's ironic and sad that I'm hoping some damage is going to show up, I really don't believe there can be so much wrong with my knees and be in so much pain for there to be nothing wrong. My personal theory is that there is some meniscus damage on both knees as well as the chondromalacia and early osteoarthritis (which a private knee specialist suggests I have). I'm also incredibly nervous about the results, if my scans come back fine then I'm going to be utterly dismayed as it has been such a long and tiring fight to get my GP's to recognise something is wrong with my knees. Which leads me to a question for you all, has anyone had an MRI that didn't show the extent of damage in your knees and if so what happened next?

Lastly I wanted to say to everyone please don't give up on fighting for a diagnosis, if you feel your healthcare isn't right then keep searching for someone who can help you. I really struggle with asserting myself and my self confidence with medical practitoners is shattered. I hope that  you can all find the strength to stop others grinding you down, your pain levels already do a good job of this. And, lets face it living with daily pain is something that only other people with chronic pain can understand. You all have my support and best wishes for your knee injuries/diseases and I know that without the kindness of strangers on forums in particular LindaM, Brambledog and CapnRuss, I would have felt even more isolated than I already do. So all I can say is keep hope everyone and you all have my  heartfelt thanks and best wishes. As my way of reciprocating I'm making a point of inviting anyone who needs a sympathetic ear to message me, I'm always up for making new friends.

Hope I haven't sent you all to sleep lol and thanks for reading

Phantom_cyber_wolf  :)

     
Nobody realizes that some people expend tremendous energy merely to be normal.
-Albert Camus

Offline Brambledog

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Re: JHS, MRI anxiety and thanks to all the knee geeks :)
« Reply #1 on: March 05, 2013, 05:52:03 PM »
Hi wolf,

Bless you, how nice :) it's lovely to know that anything I've said has helped, even a tiny bit! Thank you for that, and for your own support.

MRIs. Oh yes, I had one on my knee originally which, to quote the surgeon, 'showed nothing'. Yes, nothing. Which was why they did the arthroscopy, because they weren't sure what was going on. When they got inside my poor knee, they found grade 3/4 PFOA and a lot of shredded cartilage swimming about. I requested the paperwork and MRI myself afterwards, and the report from the radiographer said 'partial full-thickness fissuring' which as far as I know means blinkin cartilage damage! And you can see it on the slides. Grrr. I think if they'd taken just a few minutes to really look at my MRI and the report, and given my symptoms, they could have deduced PFOA without the damn arthroscopy which resulted in CRPS throughout my entire left leg and now my arm too.

MRIs are not that good at showing certain things....very good at others.... Read up yourself and find out which is which, and be prepared to stand your ground if you think the OS is confusing things.

Sorry for the rant. Basically, you do have to be cynical about this game. I'm rubbish at challenging authority too, and have the white coat respect thing. But I've learnt the hard way that they are human and fallible, and they get stuff wrong sometimes. Important stuff. So check and double check yourself to see what has really been said. Then listen to their advice, research it all yourself, and make your own decision. Don't let them sleepwalk you into an op...

I get almost 'excited' about proper tests too, because they might finally give you the answer you've been fighting to get...  I'd recommend you ask for a copy of the MRI, and when you see the consultant, ask him to actually show you which bits he's talking about. Mine just skimmed over one slide and switched the screen off!! It would be funny if things had ended differently lol.

Take care of yourself, and good luck. Let us know what happens. I don't know much about JHS but I'm going to go and read up on it, I like something new to research, got quite into all the medical jargon ;)

All the best,

Brams  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline Phantom_cw

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Re: JHS, MRI anxiety and thanks to all the knee geeks :)
« Reply #2 on: March 08, 2013, 01:31:22 PM »
    Well... I went for my MRI on tues and the assistant (not a receptionist, but not the radiologist either) went through the MRI procedure questions and then asked me what I was having scanned. I told her I assumed it was my knees, she then asked to see my appointment letter which didn't say what I was having scanned then checked my MRI request form. Looking at the form in the box where it asks which part of the body there was 'knees, back and pelvis' written on three different lines, then it had all been crossed out and scribbled over and in tiny writing above it 'pelvis' had been written. We were both a little confused so she went to ask the radiologist. The radiologist said that it's fairly regular procedure to check the pelvis first and that they would probably send me for my knees doing at a later date. I understand that pelvis and knees could be related I've had enough physio and podiatry appointments to know that but all the scribbles have left me unconvinced ???

The scan itself went fine I tried to keep my eyes closed and relax at first but actually relaxed much easier once I'd opened my eyes. Never had a prob with confined spaces so everything went fine there except staying still for so long was a bit painful but tolerable and I expected as much anyway. 

 I went to my GP's today and think I have found a nice one at my surgery  :D (I'm at a new GP's having moved in Nov and am currently testing out diff Dr's till I find one on the same wavelength.)  I explained what happened at the MRI. I told her that I understand the pelvis is probably a useful scan but the the scribbles had left me concerned that it wasn't right. I also mentioned that my next appointment with rheumy isn't until the end of May and that I didn't want to wait till then in case they were the wrong ones and that if it was wrong then I could have my knees done before then anyway. She looked on my files on the comp and said that it was recorded that the rheumy/registrar had requested both knees scanned. >:( hmmm... anyway she's not entirely convinced either so she's going to get the GP's admin to get in touch with rheumy and double check it. Let's hope the GP's can come through for me now....

Anyways there's the initial update.

Quote
Take care of yourself, and good luck. Let us know what happens. I don't know much about JHS but I'm going to go and read up on it, I like something new to research, got quite into all the medical jargon

Thanks for the good luck wishes. I know what you mean about the research. I know doctors are getting tired of know- it -all patients, but when you're left to 'deal with it' and you haven't had things explained to you then why shouldn't you try to keep yourself informed. Especially with have such vast resources at the touch of a button. I am a research hound and documentary junky (if they had a OCD category for research I would probably fulfill it lol ) and dread to think of the hours I have invested so far into researching knee issues, physio, meds and examinations. Hmmm... Besides which I find it all rather fascinating. I wish my science teachers could have told me what cool jobs were out there to do with human biology, chemistry and psychology as I would have liked to have actually tried applying myself in these subjects. Then again 15 yr old me wouldn't have listened, she was convinced she was going to go into musical theatre or drama lol :D If there was a medical library I could access I would be in there like a shot!

Quote
Grrr. I think if they'd taken just a few minutes to really look at my MRI and the report, and given my symptoms, they could have deduced PFOA without the damn arthroscopy which resulted in CRPS throughout my entire left leg and now my arm too.

I'm sorry to here that your arthroscopy has tripped out your nerves and led to your complex regional pain sydrome, what a big pile of bottom! >:( (yes, I like mixing my descriptive images :) ) I think its highly likely that pain in my knees is such that I will take surgery if offered though I will try to weigh up the cons and pros first.
 
Sorry for the long ranting post everyone but it's just another problem to add to the expanding list of healthcare issues. Some people collect porcelain figures, others model airplanes, apparently I'm now collecting inconsistant,  unsympathetic and uninformed  medical staff. :)
Nobody realizes that some people expend tremendous energy merely to be normal.
-Albert Camus

Offline Brambledog

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Re: JHS, MRI anxiety and thanks to all the knee geeks :)
« Reply #3 on: March 08, 2013, 02:22:49 PM »
Hi again,

Will reply properly soon, not got much time at the moment (for a change, lol)...

I've got a similar collection growing by the month  ::) sadly it seems to be pretty much worthless, and may in fact be a bit of a loss-maker. Frustrating isn't it? Glad you've found a good GP, hope they come through for you. I'm still trying to find one - been through two at my surgery, starting on the third now. So annoying when I end up knowing more than them about my condition, but don't have the medical background to be able to work the whole thing out. I just want some decent informed advice. Seems to be pretty scarce...

Sounds like they screwed your MRI up a bit, should have been knees first surely, pelvis after or with them?

I'm similar on the science thing. I hated it at school, but came to love it as an adult, and did a general science course with the OU, fell head over heels for geology ;D and ended up completing a degree seven years later. If it interests you, go for it. There's loads of stuff online.

Take care and good luck, again!

Brams  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline Phantom_cw

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Re: JHS, MRI anxiety and thanks to all the knee geeks :)
« Reply #4 on: June 07, 2013, 11:26:41 AM »
So the word of today is denial....

I finally had an appointment with my rheumy to discuss my mri's (knees included this time), and it showed nothing apparently. Absolutely nothing. My rheumy thinks that all of my pain is chronic pain condition, and that all the crunching, grinding and crepitus is not related to any wear and tear contrary to the knee specialist who said he could feel it when manipulating my knees.

I just cannot believe it. There are too many mechanical issues with my knees for me to believe there is nothing wrong with them. Painful catching sensation in my right knee it feels like something gets trapped when I move it sometimes and the left knee gives way and locks.

I can wrap my head around having a chronic pain condition I've always suspected that there is chronic pain with something else going on, a lot of movements in my knee are painful. Surely chronic pain shouldn't be movement related? I cannot accept it.

My rheumy suggested some physio to help and by this point at my appointment I was already in tears and was too distressed to tell her I am already doing physio and that this is my my second round of physio as first time they just couldn't figure out what was wrong with my knees. 

My diagnosis of Hypermobility syndrome was confirmed which I feel was helpful. Some new meds were prescribed and a referral to an OT was given and these are all helpful but I am struggling to hold onto the good that came out of the meeting. :( I am scared that now it is confirmed that I have a chronic pain condition I will just be told to 'get on with it' seeing as the pain will be there regardless. I just don't have the strength to keep being brushed off anymore. :'(
Nobody realizes that some people expend tremendous energy merely to be normal.
-Albert Camus

Offline Brambledog

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Re: JHS, MRI anxiety and thanks to all the knee geeks :)
« Reply #5 on: June 08, 2013, 01:53:04 PM »
Hi Wolf, that all adds to one rough time for you at the moment  :-\ hope you're having a better day today...

MRIs....hmm....especially when they show 'nothing'... Get hold of your MRI yourself including the report, and the letters that have gone between your rheumy, pain management, ortho and anyone else. Until then, you just won't know for sure. If the letters and MRI back up what your rheumy said, then you can at least start to try and get your head around it. But it's hard, so disappointing and complex. I've been there and it's not pretty, but you do come through, and you learn to cope and deal with everything. I wish you didn't have to though.

I know what you mean about the chronic pain label, but if you keep on top of things yourself, read up on the conditions and their realities, then you have a good chance of fighting your corner and knowing when something ties in with what you already have, and when it needs investigating. You have to believe in yourself and develop a strong sense of self-worth, because yes dealing with docs and nurses who don't understand your conditions (or pretend that they know them better than you when clearly they don't!) is something we could do without. Remember that you always have choices, and that you have a right to proper care, so seeking another opinion is always an option, and can give your doc a kick up the backside if necessary  ;)

Seeing another physio sounds like a good idea I think. It might give you something new to focus on, and many physios are very aware of the frustrations their patients go through because of confusion and poor doctoring. If you get a crappy physio then request another one. Don't put up with anyone who makes you feel worse about things! OTs can be amazing, see what comes of all these avenues, and then pick the good stuff and discard the bad...might even be worth seeing a psychologist if you can, dumping all this on someone's shoulders can really help with the whirlwind in your head.

Sorry I can't be more helpful! Take good care of yourself, and have a few treats, you deserve better than this, but you will get through this time and have fun again, even if it's not nightclubbing or rock climbing  ::)

All the best,

Brams  ;)

2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)