What next "update"

WELL WHAT A WASTE OF TIME:

Saw GP this morning, one good thing all blood tests were fine. Spoke about my Diabetes and he has upped the Gliclizide to 80mg a day, see how I get on with that over the next few weeks.

He hasn't received the Rheumatologists letter yet, but I told him what was said that he doesn't think its arthritis, but diabetic neuropathy and or my Fibro. Well my GP doesn't think it's either of them so is waiting for this letter and said that as the consultant upped the Hydroxychloroquine and is thinking of putting me on Lufflonmide (sp), there is nothing he can do as I am still under the care of the consultant. He agrees there's heat in the hands, swelling, pain and inflamation, but he said if tests were needed they should be actioned by the consultant.

I am not seeing the consultant for 9 months, so where do I go from here? I'm at a loss as to why my GP can't send me for tests himself, or is it all down to costs? He also told me that the Rheumatology Department at my Hospital is under a lot of pressure, so what, the whole of the NHS is, this surely shouldn't have any influence over whether you get tested for something or not. If these two medical professionals don't know what is causing my symptoms surely they should be sending me to see someone else who could possibly find an answer.

Sorry for the rant, but this has been on going for over 2 years now and nothing that has been done has helped. I know I have some weird ailments and intolerances to medications, but it is the 21st century and I would have thought there is something out there that could help or someone.

Hope you are all as good as can be.

Gentle (((((hugs))))) everyone

Jan

15 Replies

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  • Oh, it's crazy & yes it's probably down to cost, with both, though your GP won't want to usurp your Consultant's instructions, nor should he, these are Specialist meds. But yes, the logical thing would be to refer you wherever for whatever, assuming your GP has already done the tests for diabetic neuropathy, the normal checking your feet ect with the thin nylon wire-type thing?! That said referring you to Neuro to my mind would be the obvious thing to do unless the Practice have been instructed to defer referrals? None of this helps you though does it & something needs to give. Personally I'd be asking some direct questions, some that can only be answered in the positive, saying it's been 2 years now & you're no further on, still in the same boat & it's not good enough!

    Whether the Rheumy Dept's overrun or not is no concern of yours as a patient & shouldn't be given as an excuse. That would make me think about looking or at least checking the other hospitals local to you, consider asking for referral to a well run Rheumy Dept. Oh my, my reply is turning into a rant on your behalf!

    I hope this mess can be sorted Jan & you get the treatment you should expect to have. x

  • Thanks NMHs, I now have to wait for GP to get this letter and see what he has to say about it. I have had the neuropathy test with the nylon wire things and the practice nurse said everything was fine and this was only about a month ago. If I don't get anywhere with this I will ask for a second opinion.

    Thanks for the rant on my behalf greatly appreciated.!!

    Jan

  • Aw bless. Is the Practice nurse well versed in Diabetes? Often there are little signs & only someone who's properly trained to take Diabetes Clinics will recognise them. I think it is maybe time to seek a second opinion if you don't get anywhere, which is a nuisance & all you need feeling like you do but if it means you get to the bottom it so be it. Keep us updated won't you? x

  • Thanks NMHs, the Practice Nurse is very good and very experienced with all the clinics she does. Will keep you up to date with this saga

  • Oh my goodness how frustrating for you. I agree with nomoreheels it's about time you had some answers from the medics. It sounds like your GP is pushing it all back to your Rheumy so he doesn't have to fund the tests you need. You must keep on fighting for the treatment you need and hopefully someone somewhere will listen and do something to help you.

    Do you see a specialist diabetic nurse regularly or just your GP? My husband is a diabetic and in his experience GPs don't know much about diabetes management. If you can get either a specialist diabetic nurse or hospital diabetic consultant involved re the neuropathy you may get the relevant tests for that.

    The other thing I thought of is can you get back to see your Rheumy earlier than 9 months? Can you speak to a specialist Rheumatology nurse and explain the conflict in diagnosis from your GP or contact the Rheumatologist's secretary who might at least get that letter sent out to your doctor sooner.

    I've said this before that we have to be one step ahead of the professionals these days and need to be more proactive than ever before to get the treatment we need. Good luck!

  • At the moment I am under the Practice Nurse and GP for my Diabetes, the nurse is very good and does make suggestions if need be to the Doctor. I have just come off Metformin due to bad diarrhea, this was done by Locum doc over the Xmas period, she prescribed Gliclizide, I am now on 40mg twice a day, started yesterday, have to monitor blood sugar for the next couple of weeks. I have a number for the RHEUMY nurses, but they don't do anything without going through the consultant. Will try them again once I've spoke to GP about consultants letter. I have a number for Consultants secretary too so could contact her re the letter to GP and also request a copy for myself. He said has he dosen't think it's arthritis, he won't discharge me yet, but doesn't want to see me for 9 months. I was so stunned I didn't know what to say at the time.

    Thanks anyway for your observations on this awful situation I find myself in.

    Jan

  • My heart goes out to you, no wonder you needed to rant! The previous answers have covered it all I think, but I just wanted to offer my support. I do hope that you somehow get the support and treatment that you are entitled to. It's disgraceful that you are left without either, I feel so angry for you.

    I'm so lucky, my gp is caring and supportive, I probably wouldn't still be here without him. Any chance of changing gp? Although I know sometimes it's better the devil you know.

    Don't give up! You're in my thoughts. M xx

  • Thanks M for the support, there is only one GP in our practice, but there are other practices locally where we could go, but as you said sometimes it's better the devil you know.

    Jan

  • Keep pushing. Phone the diabetic nurse for advice , tell them of your situation and plague your gp !!! Sometimes you gave to be your own advocate in this game and I remember being in a similar situation and my hubby came with me and boy did they move!!

  • I will keep pushing, not up to much at the moment with this chest infection/ flu bug, but once feeling a bit better will start things rolling again. Only see Practice Nurse for diabetes and GP so no specific nurse to call.

    Thanks Allanah for your input very much appreciated as you have had to struggle to your own problems sorted, you can understand where I'm coming from, brick wall springs to mind.

    Jan

  • Can you ring them and get an earlier appointment? That is not acceptable to wait another 9 months. And who is monitoring you on the leufenomide? That can have some terrible side effects. gave me peripheral neuropathy and swollen limbs. Push back. You know it makes me cranky that pateints have to to do all this, it adds to the stress and triggers more symptoms. aghhhhh

  • The consultant said he didn't want to see me for 9 months, it's just a wait and see I think, he did say I could try Lufflonmide if my blood pressure was under control, but last year he told me he wouldn't recommend that I take this drug because of my blood pressure (confused). I told him I have had high blood pressure for many years and I am on the highest meds, according to my GP, I take 50mg of losartan twice a day and it still fluctuates. I will still push for some answers and if need be ask for a second opinion.

    Thanks for all your help.

    Jan

  • I find that unbelievable seeing the state you are in that they are all just going to leave you like this. Unfortunately we have to be our best advocates and it really should't be such an adversarial situation.. Why does it have to be so hard on top of everything else we go through. Makes me so angry for chronically ill people.

  • I hope you can get somewhere with this. One thing, we wary of going on prednisolene or other steroids as it affects blood sugar levels. Caution is needed there!

  • Hi Cathie, I have to take steroids for my Sarcoidosis in both lungs, got down to 5mg last year, but had a text to reduce further and it showed I was not producing enough of my own cortisol so they upped it to 7.5, I had it increased recently to see if it would help with the inflammation and swelling in hands, to 10mg and then 12.5, my Rheumy told me to start decreasing back to 7.5 over the next few months, back on 10mg at the moment. My GP won't give steroid injections because of the diabetes. It's all a catch 22 situation at the moment.

    Jan

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