any suggestions please

[Debwilson]

long story short - pins and needles in hand for a year, really bad, getting worse and traveling into my arms. Swollen feet and my joint ache all the time but getting worse. Blood test show serum Vit B 12 at 64 (instead of base range from 144), serum folate 1.8 instead of base of 3.1,, serum inorganic phosphate 0.7 instead of base 0.8 Vit D at 24.9 base is 25, and anti nuclear antibodies weak positive indicating an association with autoimmunity. Mother had underactive thyroid (they said mine is fine) and recent blood test to check for pernicious anaemia shows that my intrinsic value is normal. Any ideas people? am waiting for another consultation from the GP but that is if I can stay awake long enough.

[Hidden]

Has the gp prescribed and treatment yet?

[Debwilson in reply to Hidden]

the first GP said there was nothing wrong, so i asked for my physical blood test results and then asked to see another GP who arranged the intrinsic blood test - that come back today as normal. i am waiting now to see what they are going to do but I am barely functioning with confusion and exhaustioni was told that if the intrinsic blood test comes back as positive that will be pernicious anemia and i would have b12 jabs, but am concerned that as it came back negative they wont give me the jabs and i can't cope much longer feeling like I do

thanks for replying

[Hidden in reply to Debwilson]

Well looking at your results you are in need of folic acid and b12. Obviously your first gp needs to go to SPECSAVERS! I wouldn't be able to cope. Does the doctor know about pins and needles and aches and pains. You really need to get treatment as soon as possible..... these blood results are NOT normal nor your symptoms.I would definitely chase them up. Dont be fob of with tablets. A good tip before getting injections is start eating bananas

Good luck

[Debwilson in reply to Hidden]

I am due a call back from the GP who has been to specsavers fortunatly, I have refused to speak to the other idiot who told me that 'blood tests are like traffic lights and there were no red lights on yours' I asked him if there were green lights and he said no, but a lot of people are amber and thats just how some people are. i have white coat syndrome so only go the doctor when I really have to, probably been 8 times in 10 years, 5 of them have been over this recent concern, and 2 were for my gallstone surgery. I am not letting it drop, I am on it. i will update on here once i have something to report . thanks for replying, i feel like I am not going mad and trying to make a fuss now

[Debwilson]

the Good GP phoned be back, I am starting B12 jabs asap, thank god. I may feel normal again soon

[Hidden in reply to Debwilson]

Excellent did he address folic acid as this was low?I am glad you are having b12 shots, best to have banana before injection !

[Debwilson in reply to Hidden]

I'm goingbto ask when I do on Monday, but they are saying with the b12 being so low it can knick everything else out, but I will ask. Thanks guys

[PhilAB]

It is only the start of your journey. Your symptoms are concerning as our your levels. Your folate is so slow as is your b12. Not that it would do anything but I would put an official complaint in, but instead focus on your healing. IF test is so unreliable you may need 3 to 5 before you could feel confident you have PA or not.

Instead I would treat yourself as if you did have PA as woth b12 64 and filate 1.8 you are ridiculously low.

The loading doses will not be enough, I would be looking at daily or eod until your symtpoms stop Improving which could be a long time. You need folate and I would change your diet to make sure it is potassium rich.

You should also cut out alcohol and don't smoke if you do.

Obviously, your doctors have already explained all this to you.

[Debwilson]

I'm having 3 jabs in one week and then every couple of weeks I think. Keep you posted, and yes a complaint is being done for sure

[Michael-MGP]

Has Cervical stenosis been ruled out?

These are exactly the symptoms I have - I had to go private £7K to get this diagnosed - took 2 years.

Bone Spur on C3/C4 compressing my Spinal Chord causing issues on extremities.

I am under observation as they don’t like operating. At some point they will need to.

Good luck.

[Michael-MGP in reply to Michael-MGP]

I forgot to mention: I do have B12-D due to PA.A GI specialist has confirmed to me:

People >60 with B12-D; 100% get B12-D due to PA.

I’m 63.

Watch out for the Mental Health campaign.

Download the Patient Charter from NHS and remind the GP of their responsibility toward you as a patient.

My experience is that Doctors have little or no knowledge of the Charter which is effectively their working procedures.

Hope that helps….

[Debwilson in reply to Michael-MGP]

Michael, thanks for this info. Did you have back pain? I have generalized joint pain all over but no specific pain anywhere. Thanks

[Muver]

I'm sure my doc and your doc must be related,my doc refused to give me b12 even though had them a few years back,anyway I have started paying for them .No more pains in joins,I can now walk with out walking stick ,no pins and needles ...intact I feel amazing 1st time in 4 years and I'm 60 ...

Good luck x

[Debwilson in reply to Muver]

I only found this site yesterday and am so grateful to you all, I have felt like I was getting dementia with brain fog and memory issues, and will keep you all posted, hopefully it all comes right. I work supporting patients of the nhs to get their voice heard and am gobsmacked at the treatment or lack of it that has happened to so many people, it's given me so much more insight into the shortcomings and I will be taking this further. I just hope I start feeling better soon. I've put myself on a diet and lost a stone in 3 weeks, I don't drink, and can't do much more to help myself and feel I was failed when I asked for help. Angry and frustrated isn't strong enough for how I feel. I have more blood tests after 3 months of b12 so make sure it's working. I worry now that if it isn't what happens next. Oh well let's hope it works. Have a good weekend all and thanks for the support. Does anyone have PA but their intrinsic factor is normal? Can that be a thing?

[Hidden in reply to Debwilson]

I am sad that you have this condition, but to hear you work supporting patients for the nhs is a bonus to us all. When I Was first diagnosed and in hospital nurses would constantly say there was nothing wrong with me and it was all in my head, pointing to my head with there finger. At that time I asked to speak to someone who would listen to me too no avail.I also lost two stone in weight as I couldn't eat (Vegas Nerve)?. On my discharge a lady and specialist came to see me with a bread roll trying to tell me how to eat.

If only they knew the problems associated with b12 deficiency.

I haven't been officially told I have PA although 6 members of my family have the same condition.

[Debwilson in reply to Hidden]

How sad. In our area we have Healthwatch which oversees the nhs surgeries, and they have a good reputation for dealing with complaints concerns and feedback. We also have PALS in Milton keynes who deal with hospital concerns. It makes me sad and angry when people are not heard, especially now it has happened to me. I am going to make a formal complaint, and suggest if enough people do they will surely have to listen. Good luck

[Hidden in reply to Debwilson]

Strangely enough I went through PALS after.

What I find disturbing is the fact nurses can say things like that! What if the person was actually suffering from mental health problems.

I knew there was something seriously wrong with me and told the nurse.

Anyway have a good weekend and hoping you have a good recovery.

[Debwilson in reply to Hidden]

It is shocking, the people I support are mainly affected by mental health issues which affect their day to day life, it's really hard for them to listened to, but I become the voice for a lot of the people I support, sadly not everyone has someone to speak up for them. Have a good weekend. I'm counting down the hours til my first b12 jab

[Hidden in reply to Debwilson]

How did you get on on Monday, how are you feeling? Hope you are feeling better!

[Debwilson in reply to Hidden]

Hi, well had my first load dose Monday, and on Wednesday actually woke up feeling like something had lifted, wasn't as exhausted and I'm not sure if it is psychological but my ankles and joints didn't seem so painful. Had Mt second jab Wednesday, and not noticed much difference, have another today then three next week. I'm on 5mg folic acid as well. I'm hopeful that this is going to sort it out and that my foggy brain will clear. I will update again, and thank you for asking and for your good wishes. Have a lovely weekend

[Hidden in reply to Debwilson]

Not psychological , I can relate to what you say.Glad to hear your on folate as well. Take it easy your on the right road back!

Hope you have a good weekend too!

[Cherylclaire Forum Support]

40-60% of those with pernicious anaemia do not test positive for intrinsic factor antibody, so you could waste time trying to persuade a GP to test you until a positive result emerges because a result is 95% accurate (as good as it gets).

But with such low serum B12 results, better to concentrate on getting the injections you need. This will of course skew any further serum B12 tests -which is why retesting for serum B12 is advised against after treatment has started in medical guidance to GPs. It will be high.

Has ferritin been tested for ? With B12 deficiency, folate, vitamin D and ferritin levels can be affected. Thyroid can be affected too - there are further thyroid tests that can be done privately (postal fingerprick blood tests and results online) including autoimmune tests. I think I paid £59 for 6 tests once, just to make sure.

Wishing you well

[Hamayeshguy]

You need to exercise and try walking fast. This problem seems to be related to blood circulation issue as I tried myself and worked for me. Now I try to exercise everyday. For couple of days I'm doing so and almost all of my pin and needles and also numbness are gonebut when I sit still after of couple of minutes I start dizziness or if I get nervous I feel I get paralyzed but by walking I try to fix this.

As long as you inject I think our body heals but requires blood circulation since in low b12 our blood circulation get paralyzed which I think maybe is due to lack of proper muscle tonus

All of my finding is experimental and I'm not talking scientifically .

I think this muscle touns is responsible for blood circulation in our body along with our heart and may thats why we don't feel hearth throbbing and strong beating like before or our dizziness is because of that. These are just my guess and not scientific but it works for me.

Even by having exercise you'd see muscle fatigue shows less than before.

That's why I think along with injection blood circulation is so important and we should consider it as important factor.

I inject cyanocobalamine

Still I have symptoms like blurred vision and fibromalygia like paralysis sometime and if I seat for more than ten minutes my feet start to get needled but I'd see improvement