Another update - Totally fed up

Hiya again. I went to the hospital a month ago for a test on my hands to rule out or confirm Carpal Tunnel. As my GP did not send the full request to the hospital as to why he wanted the test to be done this "surgeon" at the hospital kicked off and would not believe my words. In the end they found the letter from the Rheumatologist who suggested this test be done on the global NHS computer system. I think they put electrodes on my hands to measure the electricity or something like that. Anyway this Surgeon dictated his findings and said I have to come back to get this test done. I thought I was going to have actual test done that day. So now I have been waiting for this letter and an appointment date for this test. I called his secretary and they said they were behind by about a month, and a lot of other pathetic waffle. In the mean time my hands are getting worse.

My plan was to take the Wednesday off and only work 4 days a week. Sadly I am busier than ever and I totally forgot that the sun goes down earlier and earlier, hence reducing the hours I can work. So I only take off the odd Wednesday, and even work the odd Saturday, but not all day.

For those who do not know I am a self employed gardener. I thought if the weather gets colder I will get less busy, but it seems this is not the case. Most of my customers are elderly and/or disabled. And I have a hard time saying "NO".

I just need to have this test done so that I can take the results to BUPA and get the surgery done this winter. I only have limited cover on BUPA and they won't pay for everything. I think I need to call them as well and find out what I can do to speed this up. Been waiting 4 months now to get this test sorted.

I am still on my meds and feel they just want to fill you up with drugs and make you go away.

8 Replies

  • Hiya Breadfruit. I'm sorry to hear you still haven't had you carpal tunnel release surgery. Your experience couldn't be further from mine if you'd received your treatment on the moon! Hindsight is a wonderful thing but maybe just sticking with the NHS & the referral to Neurophysiology & in turn the Neuro Surgeon by your Rheumy or just having your initial consultation privately then changing to NHS would have got you closer to your op. It sounds as though, as can happen when switching from NHS & Private, things have become confused & there could have been the possibility if you'd just waited for NHS referral through your Rheumy it would be done & dusted by now. Not that it makes it any easier or right but in the meantime your CT symptoms will obviously have worsened.

    On a positive note, the extra work you're receiving will help pay for the shortcomings in your medical cover.

    Anyway I hope the appointment comes through quickly & your nerve conduction test shows enough to get you up the waiting list a few rungs!

  • Hi NoMoreHeels

    My GP would not refer me to anyone. No X-Ray, no MRI. Just fill me up with drugs. That is why I went private to speak to a Rheumy and get a proper diagnosis. He suggested the Carpal Tunnel test and also an MRI of my neck. Which was done and the Private medical cover paid half of the MRI, which confirmed spondylitis rheumatism in the neck impeding the nerves going into my arms. But before that a couple of years ago I had beginning symptoms of Carpal Tunnel in one hand.

    GP was peeved that I went private and that the diagnosis was different to his. Since then everything is hitting the fan. If I get no results by November I will have the test done privately as well and any surgery if needed.

    Just need this test done. So frustrating.

    The money I earn from my elderlies and disabled just about covers my running costs. Just had a repair bill for my van as the brakes and disks had gone, £500 I needed to pay. Thats why I have taken on a few customers who are more regular and who I can charge more.

  • Sounds so like cervical spondylosis to me & the CT is as a result of uncontrolled inflammation. I was diagnosed with CS comparatively close to RD diagnosis around 6 years ago & just recentlybgetting relief from sufferering cervicogenic headaches because of CS. My Rheumy requested my GP did a full pain relief med review last month & she prescribed BuTrans patches & amitriptyline. My OA is progressing & I'm reasonably convinced it's aggravating the CS, or the OA has spread to my neck! The patches are controlling the pain greatly & the ami is relaxing my muscles enough to relieve my headaches. As long as they continue to do this & I continue getting a reasonable night I'm content enough but if regular increases in dose need to be made I'll ask my GP to sort further investigations. My CT was totally relative to my RD at the time, confirmed by xrays, tests etc as severe but I also now have similar symptoms in the same shoulder & elbow minus the cold & numb hand which is why I think it's possibly neuro, caused by OA as my RD is med controlled.

    Have you ever been tested for rheumatoid, either a rheumatoid factor blood test or anti-ccp or are you being treated already for an autoimmune disease? It seems to me you're a little in the dark.

  • I had a blood test which came back completely negative.

    My GP does nothing. Absolutely nothing. If it were not for this site I would be in a complete cave of darkness knowledge wise.

    You are right regarding the diagnosis. What does "OA" mean? No, not being treated for an autoimmune disease.

    All I can say that carpal tunnel runs in the family mother side. She had it plus my gran and aunt.

  • Do you know what the blood test was to detect & was only the one "negative" result given? I ask as mine came back as a high seropositive result & from that had a diagnostic clinic appointment very quickly. In some people it can be a seronegative result & can be more difficult to diagnose as their blood doesn't produce the antibodies that defines more clearly which autoimmune disease they may have. Take a look at this

    Is there not another GP in your Practice you could see, if only for another opinion?

    So you have CS then? Did your GP/Rheumy not question any other problems you have, apart from CT, or do any of your immediate family have RD or related diseases?

    OA is Osteoarthritis, degenerative joint problems this explains in some detail

  • Thanks for the links. I have read them. I have a copy of the blood test but need to dig it out the file.

  • I waited an age for my carpel tunnels in both hands to be done and by the time I had surgery the pain was right up to my shoulder. I had my right hand done first and then 6 months later my right hand by which time they discovered osteoarthritis starting in my right thumb. When you do get the surgery make sure you start exercising your hand as soon as you can after. I didnt do enough of this with my right hand and I still have problems with gripping things. As for the negative blood test, mine was coming back neg for rheumatoid arthritis but after a scan on my hands in March they discoverered I have sero negative Rheumatoid disease. Hope you hear something soon and get sorted out. Hugs Joolz.x

  • I tried calling the hospital again today. Phone just rings out and redirects to main switchboard. Its been a month now. No letter, no future appointment.

    For me the pain started in the shoulders, then moved into the arms and now its the hands non stop.

    I am getting really angry now.

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