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.