Saga Rheumy appointment dead end!

Hi guys

Thanks for your thoughts and support today.

Well, no comment made on findings of Lupus specialist in Manchester. Comparing blood results today with May, Manchester results Haem 109 today 115 ferritin 5.1 no repeat plate today 423 ANA +tive with ro>8 no repeat

MCV 78 today 80.3 WBC 6.1 today 5.3 ALT ok today 19

ALP OK today 79. ESR 43 today 37 creat 59 today 70 rest ok

Manchester doc recommendation for useless GP to investigate aenemia met with iron tablet. So, Stuck Active B12 on blood test for Rheumy. Result 246 (200 _ 900) which she said fine. I asked if it could do with being more, given many risk factors I have. No. So, sourced Methylcobalamin and taking one tab a day from now and will move on.

Conceded stomach not emptying could be nerve related after noted report from Barium swallow. She too said all aok, despite my still having meal in oesophagus for hours. No further forward again. No interest.

No comment on useless GP (didnt expect one) despite written evidence that he has never followed up her requests for follow-up investigations etc, never mind Lupus consultant.

Told to choose Manchester consultant or her.

Useless Eustace did start me on Gabapentin for pain for "Fibro" but have had to come off due to side effects. She not interested. Saw A N Other GP last week about it she oked decrease down to finish but wanted urine test done to check for blood in urine! (?) Took specimen to Rheumy apt with request sent on to lab. Rheumy queried it, saying dip test did show microscopic traces of blood, but only ++ not +++ so not wanting to send to lab but she did when I insisted! (Blood in urine ok? You see what I am dealing with!) need follow up test one month.

Rheumy then queried Azathioprine dose of 75mg as started for Autoimmune Hepatitis and wanted to reduce it. Only increased to 75 from 50 18mths ago as liver started to alter Liver Function Test in blood test. No way Pedro.

Hubby thought her reasonable, nice. I came away with blood in urine and no further development on anything. Request for other fibro drug = GP. Drug for Sjorgrens, = GP. Noted face pull at self adding Active B12 on blood form, ok not told off.

She ended by saying I had to choose between Manchester or her!

We then went to PALS at local A&E hospital re useless GP for advice, local not have one, but only deals with hospital services. Did listen sympathetically and ref me to PALS Community Officer who deals with GP problems. Agreed .i was not being heard and disliked recent experiences with GP practice. Hoping referral brings gold as that lady also covers major city hospital where Lupus specialist is, as Manchester a much longer journey time. Think I may go private for Lupus consult to see if he/she knows of good GP with an interest close to me. Then, on NHS. EITHER Lupus specialist or Rheumy specialist, not thought it through yet.

So, several months on saw one thorough good Consultant, two further diagnoses not confirmed by my Rheumy but still feel hit brick wall of non proactive docs. Dont want more diseases, dont expect cures just answers to my questions about symptoms that satisfy me all roads gone down, even if that means all checked, no help. I will get on with it whatever.

Hope I have helped with some tips of how to go about things and places to try for help. Good luck with your ongoing journies everyone. I wish you GPs with ears to listen, a heart to understand and a brain to investigate your ills. Cherish one if you have one.

Best wishes

⚽️

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13 Replies

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  • Bleep bleep flipping bleeeeeep!

    That's to my reply disappearing 3 times and to unreasonable medics!

    Ok sorry .Not what I hoped for you at all.

    It is happening far too often that there is no continuity with consideration or treatments for Lupus /auto immune sufferers.

    I have experienced a lot myselfso know how others feel when hooe and expectation turns to dissapointment,anger and loss of hope.

    I am lucky now ,after too many years , to have found a rheumy and Gp worth their title.It took a lot but keep looking,asking and insisting until you find one who treats you correctly.I had a Gp for 3 years who said I didn't have Lupus ,Eds or cancer because I didn't look the type!?Guess what registrar joined practice and Bingo full house dx with all 3 luckily before it was too late.

    Keep going with your gut feeling,sorry no pun intended,until you feel okay with your treatment provider and plan.

    Phew I think that's me done

    Take care feeling for you x

  • Thanks effie. Its the support on here that keeps me going otherwise Id have well given up by now.

    Glad you got a decent GP and some good treatment too. I will keep trying. When community PAL gets in touch, I hope she is intelligent to give a good wink as ethically she cant express preferences, but she can know tales of the good ones out there. Heard more hair raising tales of this GP again, so I am outta here as soon as I get some guidance. Will let you know if and when.

    You take care too

    Love

    🌹⚽️

  • For goodness' sake! What's wrong with these people?? It's terrible how no one listens! Totally agree with your NOT reducing Aza for your liver, the blood results are fine-ish because of it!

    Good for you for going to PALS - I suspect everyone is so dissatisfied nowadays, not only patients but doctors too, no wonder the standard are slipping.

    I like the plan to go privately then back to NHS - a never ending journey to finding a decent doctor who knows his/her stuff and cares!

    Take good care of yourself in the meantime x

  • Thanks guru. As I said to effie, could not do without you all.

    Thanks for Aza comment. Plus, they have proved simmering inflammation SOMEWHERE. Conundrum is... Aza drug of choice for most of our conditions so I would have thought an increase of more use! Will see Useless Eustace Friday, back from hols( hope it has done some good) so lots to ask, again for meds. Hopefully get pain meds as pain kicking in big time at mo.

    Ha, got physio tomorrow, ouch, ow, recommended by Manchester. Apt letter arrived. PHYSIO IN CLINIC - OLDER PERSONS PHYSIO! Been, misunderstanding. Tested strength mostly and ability (shades of PIP) given exercises. Nearly fell over laughing!πŸ˜‚πŸ˜‚πŸ˜‚

    Oh right. Cheers, thanks, made up. Talk about adding insult to about to be injury!!! Honestly!

    Thanks again PT. you take care too

    Love

    ⚽️🌹

  • Do you have a local Lupus support group? If so perhaps someone there can point you in the direction of their GP?

    Reading how hard it is for some of you in here makes me count my lucky stars. I went from reporting aching joints to a dx of MCTD within six months, and would have been quicker if I'd called for my blood results (thought they would phone me!)

    You mention Manchester. Would Leeds be easier for you? The Rheumy clinic at Chapel Allerton Hospital have been nothing short of amazing. They have a support line so any issues, I call there, talk to a specialist nurse who flags anything up and gets me seen if I need it. I rarely bother my GP at all now.

  • Oh. Wake me up I have seen a view of heaven!!!!!πŸ˜‚πŸ˜‚πŸ˜‚

    There is my care, then there is yours. So nice, someone enjoys proper care.

    Just taking a break from scouring sites looking for Private Rheumies who are in NHS. Best one so far I could see at Spire Wirral, BUT looks like just private now. Has 22 yrs at Man. Roy. Inf. Knows Prof Bruce maybe. Treats all usual suspects! Cant go private all the time though. Maybe one consult would be enough for me to find out who he knows??

    Might stay with MRI at least proper lupus knowledge.

    Confused of ...

    Thanks for your uplifting reply

    Best wishes

    ⚽️

  • Many thanks for this update dear ⚽️⚽️⚽️⚽️ inc ALL these details! These details are precious, invaluable...so many of us can relate to these details...and realising we have this stuff in common is hugely consoling + empowering.

    Am feeling DISMAYED 😟 + GRRRRR furious 😑 at the attitudes you're up against...along with the 'stonewalling' I feel as if there is an 'iron hand in velvet glove' thing going on....with every year I knotch up, I'm increasingly aware that many medics seem to react to female gender + post menopausal age this way.

    you've got such GRRREAT replies from Effie, PT & lysianthus that there is little I can helpfully add...except to say that I vvvvv much like your plan of action: please do keep us posted.

    Hang in there, COURAGE πŸ€πŸ˜˜πŸ€πŸ˜˜ coco

    PS and such a great reply from creaky....am going to follow this thread...it's helping me so much 😍

  • Footygirl,

    I have had simular problems with a rheumatologist, and I solved them in the way the you suggest, I saw a new rheumatologist privately and then transfered to his NHS list.

    I am a retired nurse of 30 years experience I have worked closely with numerous consultants within my field, (not rheumatology) and have never seen a patient treated in the way that I was repeatedly by my first rheumatologist.

    I am quite a confident person but I was left feeling completely undermined and worthless by this person, who's job it was to help me.

    You deserve good treatment, don't let them undermine you, get yourself a new gp and take it from there.

    Good luck πŸ€

  • Thanks creaky, see reply to Lysianthus above. Its an awful feeling being robbed of power and respect.

    ⚽️

  • Oh something else to think about. I actually emailed lupus uk and asked them who the lupus specialist was in my area. Worth a try. πŸ€

  • Thanks Creaky, Paul messaged me with Dr Bruce Man. Roy. Inf.

    Take care

    ⚽️

  • Hi Footygirl

    Sorry your having to battle so much to get help with your complex health problems. Good luck with changing your GP, hope the PALs community worker is helpful. Good luck with physio on Friday. Do you take Amitriptyline for pain?. I find it helpful for nerve pain. There's also Pregabalin, the newer version of Gabapentin, you might tolerate it better although it is stronger!.

    Your postings make me very grateful for my medical team. Keep scoring Footygirl, you'll get there.βš½οΈπŸ’ƒπŸΏX

  • Hey guru

    Uplifted by your reply.

    I just started Pregablin and I did notice its strength. Unfortunately I had dental surgery today so thought better of taking it. Am flying with Tramadol and Zapain at the mo! Nice!

    Tomorrow Pregablin is back on board.

    Amytrip, had it once, did me no good, thanks for the suggestion.

    You might remember one of my many posts reporting being bullied at the dental hospital here because my complex health problems meant they would not give me the sedation I wanted. I had to sign the consent for local extraction under duress. My lovely dentist sent me to the local sedation clinic instead and they were lovely. Minimum stress. So one job done satisfactorily.

    I had to go to my gps over the side effects and saw a young, respectful GP.. She ordered a urine sample in case I had microscopic blood traces. What? Someone doing something proactively that I didnt know about, that I didnt have to beg for? A lightbulb moment at last. She was right. Ssooo she has agreed to take me on as an interesting and challenging patient! She is young but she is keen and listens! So phew, I hope she comes through, time will tell but at least a visit to the doc wont be pre empted by my screwing up my temper and patience!

    Thanks again Misty, loved the score ref! Great stuff!

    Take care

    ⚽️

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