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Hi all, I hope you're all keeping well and avoiding the lurgy that is Covid-19

I joined up here a few weeks ago and it has become increasingly apparent that I appear to be missing out? Whether that is a good or bad thing I'm not quite sure.

To give you some background in where I am currently and how I got here. In 2011 and 2016 I had sub acromial decompression on both shoulders, the first, to the right, was caused by injury opening my car boot where the struts failed and caused the injury, the second 'just became necessary due to pain' In 2013 I got up out of my armchair and was immediately in horrendous pain and collapsed onto the floor due to the pain and was in. Time and painkillers got me through the next few weeks. Between 2011 and present I started getting pins and needles down my left arm and pain from my neck down my arm. Pins and needles isn't just pins and needles, it's like well I describe it as imagine holding a bag of marbles and squeezing them until the bag bursts open. I have also had for a very long time the sensation that my neck feels like it has a load of gravel moving around when I move it and I cant move my neck fully to the left. On good days I can turn it halfway between facing front and to the left shoulder. On bad days I'm lucky if it moves to the left at all. I also get shooting pains going up the left side of my head, sometimes it's just short and sharp, sometimes it goes on like migraines. I also have a history of grand mal epilepsy since the age of 6 months old which is probably connected to where I am due to many seizures happening around stairs.

From 2011 onwards I spent many hours and appointments going between the GP, the M.U.S.I.K team, physio's, pain clinic, nerve blocks, MRI's, CT's and X-Rays going round and round in circles never getting any definitive diagnosis. The wonderful Physio I saw last time said I needed specialist referral to the spinal team at Stoke Mandeville Hospital.

From there I have had more MRI CT etc, various options ruled out through yet more tests and decision was made that my problems were complex with Duputreyns, De Quavains, cervical spondylosis (note no mention of arthritis)

The very good GP I had at the time sent me for an x-ray on my hand which showed the state of hand which led a referral to the hand surgeon at S M H and more injections into the hand. I was also added to the list for surgery to fix the problems in there. I was also referred for an ACDF and got to the top of the list and when I had my pre-op , MRI the surgeon found my left vertical artery is in the wrong place, it comes into the foramen at C5, in a loop and between that and the nerves is causing some of my issues. Immediate stop to planned surgery as if he had gone in from the front I wouldn't be typing this. I was then referred to the Osteo team the Radcliffe in Oxford which is where, in April this year I got a diagnosis of O/A, some 9 years after things since symptoms started. Hand surgery post op tests failed as anaesthetist refused due to my artery being wrong and won't pass me until Oxford have seen me.

I'm taking a combination of Nefopam, Codeine, Paracetamol (plus my asthma and hayfever meds) and Voltoral cream. I can't take anti inflammatory pills


Getting to my point, I don't have a rheumatologist and have not been referred to one and have never heard of some of the meds that are mentioned on here. Should I have a referral to Rheumatology? How do I go about getting this bearing in mind my brilliant GP left over a year ago and haven't actually been seen in my surgery for these issues, all appointment's/pain management being done by phone. Am I missing out on help and support. I have also noticed over the last year that symptoms have started appearing elsewhere and getting increasingly tired.

So, does anyone have any help/advice? I'm feeling quite lonely here.


Sorry this has been so long, hope the person with some help gets to read all of this..... Apologies also for any errors in medical terms :-)

Stay safe everyone, love and hugs, Trish xx

Comments

  • Mike1
    Mike1 Member Posts: 1,992
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    Greetings, Rheumatologists don't cover Osteoarthritis so far as I am aware, I have suffered for 20 years or so and have never seen one either. I would recommend that you see your GP and ask to be referred to the Pain Clinic at your local hospital.

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
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    I have a creaky foot in both camps, I began back in 1997 with an auto-immune arthritis which led in turn to osteo (diagnosed in 2011). The meds for the former do nothing for the latter and they wouldn't as OA is not caused by an over-active immune system. Cervical spondylosis is, I believe, a medical term for OA of the neck (ankylosing spondylitis is the auto-immune version). Dupuytrens (sp?) is not associated with arthritis but it can happen to those with arthritis.

    I manage my OA with rest, pain relief and exercise. The activity of the other arthritis is controlled by the immuno suppressant meds I take (probably the ones you have never heard of and why would you?) and have no effect on the OA. You mention asthma, that is one of the three hundred or so auto-immune inflammatory conditions, I began mine when I was seven having been born (in '59) with eczema (ditto). From what you have said I do not think that an auto-immune arthritis is a cause for concern but I am not a doc, just an experienced arthritic. Do your affected joints swell? Are they hot to the touch? Does any swelling go away or does it linger? DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Trish9556
    Trish9556 Member Posts: 551
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    Hi Mark1 and Dreamdaisy

    Apologies for not replying to you sooner, bad hands days :-( Thank you for your input.


    Mark1, I have been through Stoke Mandeville pain clinic three times, on the first two referrals they gave me nerve blocks and more painkillers, on the third referral they could only offer me more painkillers and weren't really bothered with what I was going through. Nerve blocks no longer an option with SMH for me due to funding being removed.

    Dreamdaisy - my wrist has a swelling on the outer edge on the small finger side, this doesn't go away - I'm told it's fluid? the wrist also feels like it has a rubber band that is too tight permanently round it. This never goes away. I'm aware this could be a symptom of Carpal Tunnel which was ruled out in 2018 so they may need to retest me but no idea where as the Radcliffe at Oxford no longer do CT testing and I'[m sure SMH don't as they sent me to the JR initially. or it could be something else. The thumb just hurts constantly, all the time and is very stiff to move. I am aware that as a PA my keyboard skills jointly don't help with repetitiveness of my work (I am still working from home in lockdown) but on the other hand my keyboard skills on m working days keep the thumb moving. I am now getting pain and discomfort in the other arm and in my left leg so something is definitely going on but can't get anyone to listen and understand.


    Like others in here, I am going through a particularly bad time at the moment. My GP surgery struggle to keep doctors for some reason so I'm unable to speak to the same GP twice in a row and last time I asked for a call-back to review pain meds had a call from a nurse rather than a GP .


    I just feel that I'm in a never ending spiral of pain that gets me down and I can't get rid of which in turn gets me down. I know that some pain should go when I eventually get my surgery, whether it is this year or next, or even the year after. I've just be told when it's safe to start reopening after lockdown and how high up the already classified as urgent and high priority my surgery is compared to everyone else.


    Down and out but trying to keep smiling, stay safe everyone.

    Trish x

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
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    Any swelling is caused by excess fluid, in the case of arthritis it's the joints' protection reaction to stresses such as repetitive movement. My OA inflammation is localised and goes after rest. Is that part of your wrist hot to the touch? My OA inflammation is usually cool to the touch whereas the PsA is hot: that needs ice to ease it whereas the OA prefers heat. Any pain relief the heat/cold provide is shallow and temporary.

    I reckon that GPs surgeries in all major conurbations are under huge pressure due to the lack of docs and too many patients. I haven't spoken to the same GP consecutively for years, my surgery is now down to six GPs and they stopped posting the number of patients once 30,000 was reached. I live in a reasonably large town in Suffolk and the practise has info in at least twelve languages.

    I am so used to being in pain it no longer really registers: it is at the moment however as my OA is having a whale of a time due to the weather and my mood has plummeted due to mould spores released in the air during low pressure weather. The increase in pollen is also doing its usual - I LOATHE this time of the year. 😂 DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Trish9556
    Trish9556 Member Posts: 551
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    Hi Dreamdaisy, thank you.
    The swelling on the wrist doesn't feel hot to touch but it does sort of feel warmer as it throbs. Does that make sense? It stays about the same size regardless of whether I'm working or doing nothing. Constant throbbing around the area..i've had some horrendous pain over the years caused by various things but nothing like this. It's always there regardless of what I take and most days its so bad it makes me feel sick therefore I'm not eating much. Weather and hay-fever also getting at me so I sympathise. News on lockdown tonight also makes me realise that it will probably be next year before they sort out and operate on the neck issue before I'm allowed my hand surgery. Not good
    Love n hugs
    Trish x