PA and dodgy feet balance etc.

[ryzo]

I have had PA for about 12 year's when I was 35, I was only diagnosed when my organs started shutting down turned yellow and was the "interesting case in the hospital" and I ended up in hospital getting four pints of blood, I get fairly regular injection I can go 6 weeks before Mr Grumpy appears. It wasn't until I read the old forum today that things have clicked, my balance, feeling like I have socks on and gloves all the time, unusual gate when I walk and sometime stumble and fall over especially in the dark I was never really told by the doctor about this and I now know its nerve damage from reading about it on line its not getting anybetter and recently after a scare involving my lung I am more breathless it sucks getting older lol well thank you for this forum and hopefully I can learn more about PA.

[Gambit62 Administrator]

How frequently do you get B12 maintenance shots - you mention Mr Grumpy reappearing at 6 weeks - that's a sign that you have become functionally deficient (plenty in your blood but not enough getting through to the cells where it is needed). One study in Denmark in the 1960s implied that around 40% of people have this response. You actually need to keep their B12 levels in serum really high to ensure that you have enough getting through to your cells. The reason why things seem to be getting worse may be because the treatment that you are on is actually leaving you B12 deficient for significant periods of time, causing more and more damage to build up in that time that isn't being repaired in the periods when you aren't functionally deficient.

Having said that most GPS are totally unaware of this and getting any to listen is really difficult.

[Allyson1 in reply to Gambit62]

Yes, it's like one step forward, two steps back if you don't get enough. Hopefully lots more healing will be possible for ryzo!

[LtAngua52]

I can relate to this totally. I was self injecting weekly but some symptoms started to come back, fatigue, brain fog, imbalance, low mood, irritability. I'm now trying to see if twice weekly is enough. 6 weeks is probably way too long for you. Maybe you should try b12 lozenges in between. I've returned to them too.

[pitney in reply to LtAngua52]

HI LtAngua52,

Could you tell me a bit more about the B12 lozenges you have used please, I have not come across them before, I do take B12 tablets in between my 2 mth injections and find they help a little but would be interested in giving the lozenges a go. Many thanks.

[LtAngua52 in reply to pitney]

Hi. They are from Amazon and made by Jarrow. Cherry flavour too! Sublingual lozenges so they dissolve under the tongue.

[pitney in reply to LtAngua52]

Hi ,Thank you so much for the info I will give them a try.

[Foggyme Administrator]

Hi Ryzo. Couldn't agree more with what Gambit 62 and LtAngua 52 say.

I have suffered years of no treatment, and then four years of under treatment, with symptoms returning (or never going away) in a similar way to yours.

I am now self injecting with B12 much more frequently than I can get from the NHS and hope for some improvement, over time. Fingers crossed.

People here can offer advice, information and guidelines if you need help trying to persuade your GP to give you more frequent B12 shots. However, it will be tough (as Gambit62 says), and you may find a level of hostility, from medics, that will that surprise you!

Good luck and I sincerely hope that you manage to find a way to better health.

[clivealive Forum Support]

Hi ryzo I've had P.A. as a result of gastric surgery 57 years ago yet wasn't diagnosed until 1972 - twelve years on by which time I was a "walking Zombie" and put on cyanococalamin 1000mcg every four weeks for the rest of my life.

For nearly forty years after that I lived in complete ignorance of what P.A. was all about - I just turned up at the surgery every fourth Tuesday at 10.30am for my jab and went back to work. I knew no-one else in the world with P.A. and neither the succession of doctors or nurses I "saw" ever mentioned or asked how I was coping.

As the years went by I noticed I felt the return of some of the symptoms by the fourth week and used to "slip in" the occasional three week jab until about six years ago my (then) nurse picked up on it, refused to give me a three week injection and reported me to my (then) doctor who was a "one size fits all" G.P. who adamantly refused to let me have the B12 more frequently.

I then "discovered" the Pernicious Anaemia Society and posted on their (then) forum words to the effect "Am I the only person in the world to feel the need for more frequent injections in the run up to the next one?"

The rest is history. I learned so much from the replies I got that I did eventually persuade my G.P. to "allow me to have the occasional three weekly jab" and only last month (June 2016) got my (now) G.P. to agree my having the injections every three weeks.

True it's taken me a long six years or so to get where I am today, but I feel it important that everyone on here tries to "educate" our intransigent doctors because we not only "help ourselves" but also the next patient who presents themselves with the same problems.

I'm now 75 years of age and am still "clivealive"....

I wish you well for the future.

[ryzo]

Thank's Clive, I sometime feel with some doctors they speak down to you after all they are the ones with medical degree, I left my last doctor when I was diagnosed by another doctor with PA a locum when the quack was off on holiday, after all if the first doctor had recognised my symptoms sooner, I wouldn't have been one day away from dying according to the consultant so they can't know everything my doctor now is a woman and fantastic a lot younger and proactive.

[Blueby]

I think you are so right about doctors not giving any information about how conditions like PA affect you. Its almost like they think if they tell you that will lead you to go on and develop them. The trouble is when you have chronic conditions there are so many things you end up putting up with and not telling them about because when you do tell them of a symptom they don't always seem that interested. That's why I didn't tell my doctor I had been suffering from urinal incontinence because I thought it would just be brushed off. When I eventually did tell my doctor, he checked me for urine infection which I didn't have. A few months later I was diagnosed with diabetes - now on the medication I have no more incontinence.

I also have glaucoma. I have lost some sight in my left eye. A few years ago I thought more had gone and ended up in hospital. After some tests they concluded that they couldn't tell if I had lost more sight despite me insisting that I had and I ended up feeling like I had wasted everyone's time as they really didn't seem that bothered. Within the last few months I noticed another change, I didn't bother going to the hospital this time and yesterday after a routine test the doctor informed me that I had lost some more sight. I told him that I thought I had and he said I should have gone straight up there. Thinking on this I realised how stupid I was not to go because this sight once gone never comes back. But I didn't go because last time no one seemed to care and the message they send is confusing. Its not nice to feel like you are wasting their time but then again I don't really want to sit quietly going blind.

[Allyson1 in reply to Blueby]

I had incontinence for SEVENTEEN YEARS. And I had such excessive thirst I couldn't go ten minutes without drinking. It was always attributed to something else. It took that long for a doctor to realize it was high blood sugar, becacuse my fasting blood glucose was normal.

[Blueby]

That's terrible. It really shouldn't take that long. Incontinence is so humiliating and if you were seeing a doctor they should have found out much sooner why. It makes me realise that probably if I had told them originally they wouldn't have done anything.

I was pre-diabetic for ten years before they finally found I am diabetic, the reason it took so long was because my fasting blood tests were often normal. Have they put you on metformin? I am now on that and its really helping. It takes a bit of getting used to but since I have taken it I have lost about 18 pounds without even trying. I have PCOS as well and I believe that caused me not to be able to burn glucose as energy but just stored it as fat.

As a child I had extreme thirst and was very skinny so i suspect I was diabetic then or had some sort of metobolic problem. I was also always slightly anaemic and had episodes of extreme fatigue so think I also had PA at that point but it wasn't picked up until I was 44. If they actually diagnosed problems quickly they may find it cheaper in the long run because maybe a person wouldn't develop all the other conditions they end up with and people may have a better life.