fingers crossed

[shevie]

Hi everyone, I had an appointment with my Gp just this past Tuesday, following my session with the rudest, uncaring, unhelpful haematologist. She actually used the words 'sighs, oh well, i sigh all the time, it means nothing', 'it'll either get better and we'll never know what it was, or it'll get worse and manifest itself', 'we all get bad days', and then when my wife tried to point something out she put her hand up, in a 'talk to the hand' gesture and said 'i don't want to hear it from you'!!!!! She obviously couldn't give a rats backside but although my wife says I should complain, I just don't feel robust enough. Anyway, I talked it over with GP, who recommended complaining too, and i asked him for further advice. He couldn't think of any other tests to do, but did say he was happy to refer me to the Benenden Friendly Society for a second opinion. Wife and I have been members for years, they at least won't be so nasty because they're PAID to be polite! They can also give us more expensive tests that might be more accurate. He also accepted a bundle of articles i had printed off, all recommended at one time or another by this forum, and a copy of Martins book,' PA the forgotten disease' and says he will read them 'when he gets a chance'. We also told him that whilst we don't want to skew any results now, we will go down the self med route if all else fails, at which he looked distinctly threatened! However, we got the 'i'm only a lowly GP, I am only licensed to do a jag every 8 weeks, not allowed to do more' line. Meanwhile, I still have parasthesia, i feel like my right arm is no longer part of me, i have lost almost all sense of taste, and feel 'fluttery' in my tummy all the time. But wife and I know that we will only have to hang in there for as long as it takes to see this new consultant, after that we'll either get what we need off NHS or we'll get it for ourselves. BTW, are you all aware of how dire everything is with B12d.org? Please help them if you can.

[Gambit62 Administrator]

Glad that you are in a position to go it alone if necessary.

I think it is quite disgusting the way the NHS ties doctors and encourages ignorance when it comes to B12 - lets face it most of the guidance that is there from NICE is about as clear as mud in places - and it is such a false economy as they end up spending thousands on unnecessary investigations and procedures unless they are as ignorant and arrogant as your haemotologist - in which case costing the country thousands because people are disabled, can't work and can't pay taxes ... or they are having to be treated for expensive terminal/life threatening conditions when a few pounds would have sorted the problem.

NHS is a bit of a misnomer - particularly considering it's original aims. Should be renamed NIS (National Illness Service) because it has soooooooo lost its way on preventative medicine.

I see all the lobbying going on about saving the NHS in relation to parliament and really just can't bring myself to join in because I know some bits of it are so awful.

I hope you will feel up to complaining about the Haemotologist when you are better - not for you but to save others, particularly those who don't have the resources from the same treatment).

Really hope you start to feel better soon.

[shevie in reply to Gambit62]

Thanx for your support Gambit, another thing the haematologist suggested was that 'your blood sugar level is at the low end of normal, give yourself a few more calories each day'. So, I then hastily spoke to mum in law, who is not only a trained nurse but a diabetic, and at my own expense bought an accu test system and with her advised regimen, tested myself just before breakfast and 2 hours after evening meal, and guess what? My blood sugar results were so normal, she said she would kill for results like mine! So £60 saved for the NHS, and we have proved there is nowt wrong with my sugar levels. I think haematologist only said it to throw us off the scent and get us out of her hair!!

Interestingly, mum in law told me that anyone who thinks the NHS's problems are a new thing, are sadly mistaken. She reckons the cracks were becoming yawning chasms in the 1970's!! And whats more, she said she was glad to get out when she did (she was a qualified clinical instructor and nursing tutor) because it was clear that doctors these days 'know nothing! they are dangerous!'.

[Gambit62 Administrator in reply to shevie]

I'm in my 50s and your mother-in-laws comments certainly tally with my own conscious experiences of NHS - which goes back to being put on tranquilisers aged 10 (most of which were spat out of the bedroom window when my mother wasn't looking I was so frustrated by that :)). Have also included nurse telling me in late 20s that problems with my hands were poor circulation ... 10 years later and OT at work diagnosed likely carpel tunnel - waking up in am and unable to open my hands - sending me to GP for a test to confirm and GP telling me there was no such test - years of ignoring depression and anxiety/trying to treat it with ADs which I'm quite resistant to because of the whole tranquilisers when I was 10 thing. However, there are some heroes (or heroines out there) - like the overworked assistant to the orthopaedic surgeon who was in charge of pinning my ankle in 2012 who drew his attention to fact that my bloods had shown I was B12 deficient - though I got no sense out of surgeon, his students or my GP in the aftermath of that and took me another 15 months figure out what was going on - all of the symptoms that had been building up over the decades and an appointment with my GP who was telling me it couldn't possibly be B12 as I was getting shots ... to push me over the edge into self treatment and finally getting a life.

It also fits with the ridiculous 'rationing' of hydroxo-cobalamin maintenance shots which started in the late 60s and got worse in the 70s.

[shevie in reply to Gambit62]

Nice to know my mum in law was right, they often aren't!!!LOL!!! She's a sweetie, actually, and encouraging the wife to fight for me. I am so glad you finally got sorted, albeit by your own hands. Yes I am lucky, because we can afford to buy hydroxo whenever we need it. I just need to be patient for another 4 weeksish. I think that B12 def is its own worst enemy, in that it is soooo cheap to put right that drug companies are not interested. Put a price tag of £100 on each injection and they'll fall over themselves to sell it more often! If it weren't so depressing and dangerous it would make good subject matter for a sit com on the telly.

[Gambit62 Administrator in reply to shevie]

I've often thought over the last couple of years that it would have been good if it had featured in an episode of Doc Martin

I think for me that it's not just malabsorption but my genetics also interfere with transportation when B12 levels are high - funny how our bodies can sometimes be our own worst enemies - with the result that I really seem to have to flood my body with B12 to keep on top of things.

[shevie in reply to Gambit62]

mmmm, the fear i have is that no matter what, there wont be enough b12 in the world to sort me! however, we will fight that if and when we need to. I am rapidly becoming a B12def expert with great teachers such as your good self. I will look out for you on Doc Martin! Would one of these new trendy DNA tests help you find stuff out? I think they cost something like £150, which is OK if you have it which most of us don't of course. Interestingly, having done my family tree i have now found a relative , about 3 generations ago, who died of PA. When I saw the death cert, it made the hairs stand up on the back of my neck! I am now thinking that maybe my mother has PA because she had a Hysterectomy about 50 years ago and yet still seemed to suffer from some unspecified 'anaemia' afterwards, always shovelling iron down her throat. She is now 90, in a nursing home, with dementia. She was always quiet, reserved and completely insular, no visitors etc. It would be pointless now, i suppose, sticking her with needles, especially as HER doc is also OUR doc! I think bloods taken from her confirmed dementia markers (3 years ago) so B12 would not have been on their radar anyway. However, if we manage to get our doc to change his tune, i might just ask him to take more blood from her, just to see if anything leaps out, even if the test is flawed, we may see something. Keep up your support, you really are helping!

[Hidihi in reply to Gambit62]

Wow - got it in one there.

[Hillwoman]

Shevie, I put up a post the other day about B12d. I hope more people donate.

healthunlocked.com/pasoc/po...

[shevie in reply to Hillwoman]

Just taken a good look at the post you put up. I didn't realise just how much they do for people, just a vague idea that they helped those who couldn't afford to buy it themselves. I may well be going down the route of self medicating and if I decide to use Methylcobalamin rather than hydroxocabalamin then i will get it from them and pay for it, its the least i can do for life saving, life changing treatment.

[shevie]

Yes, I agree. They're doing their darndest to help us all. We've signed up to donate every month, certainly for the forseeable future, but i realise people aren't always in a position to do that. I wish I could give them a million. We had the London Marathon this morning. Did anyone run for PA I wonder? Its not really feasible for sufferers to undertake that kind of exertion but we could bully others into it, eh?!!! LOL! What about baking cake and selling it to friends and neighbours?

[Hillwoman in reply to shevie]

Well, it's worth a try. Apart from flagging up the need for donations and setting up a monthly standing order myself, I'm trying to think of ways to raise money. I'm mostly housebound though, so a marathon is out of the question.

[grib]

Hi, I live in qld australia and I can assure you we have uncaring dr here too.

when I saw a heamatologist last year I was told... there is no such thing as anemia!!

Along with P.A I am also iron deficient with ceoliacs and was made to feel its all in my head.

that is when I joined this group and it is great to hear others go through the same,, very sorry to hear so many do.. Keep searching for the right people to look after you. I am still searching for the right people but am getting closer, least now I have a dr that has heard of p.a.... very unusual here

complain about the lack of sensitivity you experienced and good luck with everything

lee,,,, australia

[shevie in reply to grib]

I can't make up my mind to be pleased that your docs are as uninformed as ours, or desperately sad that this seems to be a worldwide thing!!LOL!

[grib in reply to shevie]

Lol alright ... its a sad thing to have to rely on doctors that have never even heard of p.a.

while I think of it, I was first diagnosed by a women who at 45yr decided to become a dr to treat her own family with a mix of problems after no satisfaction with the medical community at large, anyway she diagnosed me by sight (a guess as she put it) after noticing a 2 inch wide white grey steak developed in my hair on one side. Have you experienced this or know of others who have?

my grey streak developed at about 35yrs and apparently is a telling visual sign.

I am so glad I came across this group, always interesting reading and has informed me no end.

[Roblewis31 in reply to grib]

Hi, I developed the same across the back, several people commented but my doc confirmed what it was.

[Hidden]

Premature greying of hair is a B12 def symptom.

[Chancery]

Shevie, this might be completely irrelevant to you, and I only mention it because I happened to be researching Parkinson's Disease recently and came across this, but did you know that loss of sense of taste/smell is one of the early-warning signs for Parkinson's disease? Likewise, if your 'fluttery tummy' means a sense of inner trembling in your gut, that's a sign of thyroid disorders. As these conditions mimic B12 deficiency, and vice versa, thought I'd just mention it!

[shevie in reply to Chancery]

Hi Chancery, I have a pal with Parkinsons so yes I did know this!! I have decided that when I get to see Haemo i shall ask for tests into absolutely everything!!!! NHS would have a fit at the expense but this would be private through Benenden Friendly Society, wife and i have been members for years. Would thoroughly recommend them. (Not sure if moderators will allow mention of FBS but i hope so!)

[Chancery in reply to shevie]

You are right on the money, Shevie. My doc always cringes when he sees me these days because he knows I've come up with some new tests I want, but I figure if he can't be bothered doing this research for me then I need to do it myself. The least he can do is facilitate the necessary testing.

Thanks for the tip about the friendly society, I'm going to go check them out. I'm not in a financial position to afford paid-for medical care, but recently I've been getting very frustrated with NHS limitations and wondered if some kind of private insurance might help with more expensive or unusual testing. So your recommendation was most propitious! Ta.