The Garden Fence - proper Old Style support and chat!

pollyanna_26

How about a circular needle NM . As an experienced knitter you know you don't have to use them in the round .
That reminds me how is the wrist and shoulder now Mar? I'm too far behind to catch up .
polly

MadamMim2013

De-lurking..:o
I have Pernicious anemia, the Drs have not a jot of sympathy (non of the ones I've seen have anyhow) nor do they seem to care that we are running ourselves ragged just trying to function on a daily basis!
I have begged (& I mean begged, cried, sobbed) to one GP who sneered at me stating it was my own fault for doing the job I do (HCA) and for being my mothers carer, also that she didn't understand enough about it (PA)and she would have to write to an endocrinologist for advice (she also refused to refer me to one).. I explained that as I was number 19 in my family to have the condition so I'd learnt a fair bit about it and found that information was available from the PA Society who were really supportive..She basically flipped her lid saying she didn't have time for this & I'd have to make another appointment.. Oh and did she contact the endocrinologist, did she heck.. 6 months down the line and nothing!! It makes me so angry that so many have to struggle a lot of the time due to ignorance. I will also say this encounter really knocked both my confidence and mental health, it has taken me some time with the support of the nurses at work to see that I am entitled to ask for earlier injections to aid my quality of life. So much upset for an 80p jab!!
I have continued to struggle with some horrific symptoms, so my boys have pushed me to get an appointment with a different Dr as they are becoming increasingly worried about me

Sorry for the essay (& rant) this is something I do feel very passionate about as I come across so many suffering needlessly..

Nursemaggie I so hope they hurry with your jabs, it will bring some relief, it's not always quick or long lasting yet it lifts the clouds for a time!

mardatha

You need to push that MM, or you'll end up with irreversable nerve damage. I can't talk really, as today I've had a setback re my own request to be referred to a sane endocrinologist. Left to the mercy of the homicidal Heifer.

Elona_2

Mardatha

Have you thought on contacting PALS and making a complaint about the heifer? Her daftness nearly killed you!

nursemaggie

I am 100% sure that my oncologist's letter will tell my GP to give me the injections regularly. She will not have to investigate he has already done the tests.

I hope I may not feel so cold when I get them. Ever since the warm weather stopped My feet and legs have been blue with cold. Of course my flat never got warm during the hot weather.

pollyanna_26

Elona We found pals ok for basic problems not so for more involved things .
It's not sounding as though your GP is very proactive Mar so a problem changing things . I'm not sure if you have thought of asking for a referral to another trust where the dreaded heifer is not a staff member . DD was referred to the other trust as an urgent referral some years ago as the waiting lists locally were very long . When we finally voted with our feet after the appalling behaviour of the Rheumo consultant she was placed in the local rheumo dept and things are going well .
I know it may mean longer journeys if you can be referred elsewhere and not sure how the system works north of the border .
You've probably contacted the charities involved with your illness but have you asked their advice ?
I feel angry on your behalf Mar and wonder how these unfit so called experts sleep at night obviously completely heartless .
polly x

maddiemay

Another de lurking PA sufferer here, diagnosed 19 years ago, after a few hiccoughs in the early months, folate and then iron dropping badly I was fine on 3 monthly for a number of years. Then started to fall apart and asleep after 6 weeks or so. Eventually GP agreed to 8 weekly injections and I was all set for a fight to keep them when I moved here, but nurse practitioner I saw said that they carry on exactly the same:D:D

I started to develop other auto immune conditions and also a Primary Immune Deficiency and went back to feeling cold, fatigued,etc, GP was not forthcoming on more jabs and did not want to rock the boat because they were great with all the new major stuff.

I am now another of those who buy supplies from reputable suppliers in Germany and all the accoutrements from the UK and self inject as I feel I need it (I do sub cut, which is OK'd by the PA Society and I had been trained by the Immunology people to sub cut my weekly infusions of Immunoglobulin).

Most GPs do not seem to be aware that for the B12 to be utilised our bodies need good levels of Folic Acid (just in range is not sufficient), Ferritin too, also foods rich in Potassium at the time of injections, Magnesium too I think. As Mardatha has mentioned PA Society - masses of information and help available there.

Nursemaggie - I do hope that you get your loading doses soon and frequent injections thereafter, the feeling of being freezing cold is horrid and very difficult to overcome, it took quite a while to improve and this year in the heatwave is the first that I have worn short sleeve tops in donkey's years.

I will go back to lurkdom, but continue to smile at all the animal goings on - assuming that there are any left alive:eek:, you are a lovely bunch of people:A:A

mardatha

Pollywolly they flatly refuse to transfer me to Edinburgh. Won't do it outwith the Borders and the Borders only has 1 hospital with 2 endos innit, one the Heifer and the other one her sidekick. Next step is seeing a private Spire Health consultant and see what she says.

pollyanna_26

Mardymar I've no idea if he is still there but an old friend living near Portobello was under the care of Mr Patrick at Ed Royal . She moved now but was very impressed with her treatment . If you are planning a one off paid assessment worth a search but where to go from there is another matter . Perhaps you will find someone in your area who can do the initial appt privately and works in your area under the NHS . It really shouldn't be this hard love .
polly x

nursemaggie

Me too Maddiemay I still ended up with cardigans on in the evenings and I am still wearing winter PJs even in the hot weather.