latest results

[Nonameme]

Have had Normagesic amnesia for many years never treated. Approximately 2 years ago was started on loading doses for B12 deficiency and 3 monthly for a year then stopped. Despite requests to continue these have been denied. Have type 2 diabetes and all neurological problems in feet and legs always attributed to that and not b12. Lots of gastro and walking (balance) problems put down to old age lack of exercise etc.

problems at first diagnosed as TMJ but probably ruled out. Extremely painfully neck and shoulders all just dismissed. Pins and needles in both arms and hands and a slight urine incontinence is creeping in!

My mood is terrible tears most days as I am just so tired and can do so little heart is willing but body just does not function. I forget things and my mind is so muddled. I know it is not dementia but the weakness is so depressing. Can anyone suggest what if anything I should be saying to GP when(if) I see them soon?

Annual blood tests now show b12 as normal no action needed. Results are:

Serum vitamin b12 181. -range(180 -900) so just within

Folate 6.6 (4-20)

Most result say abnormal expected no action needed.

I am on Cancer pathway this week as I have uti problems with blood and I have had bladder cancer previously.

Just literally losing the will to fight on.

[wedgewood]

I really believe that you need B12 injections . Your B12,blood serum reading is low , bearing in mind that blood serum B12 can include up to 80% of inactive B12. As you have no success with your GP , I suggest that you self inject B12 , whjchbis something that we all on this forum have been forced to do due to medical ignorance .

You also need to deal with your diabetes by changing your diet . Read the book by Dr Michael Mosley . You can get rid of diabetes by diet .

I’m so sorry that you feel so unwell . You have come to a good place though . I will message you with information on how to obtain B12 ampoules for self injection. It’s easy and cheap once you have the know -how . Best wishes .

[Nonameme in reply to wedgewood]

Thank you so much for your help and guidance as well as all the information.

[Narwhal10]

Hi Nonameme,

I am so sorry that you are so poorly. I agree with wedgewood. You were treated for PA/B12D previously but unfortunately, injections were stopped. Follow wedgewood’s advice and once you are feeling better then consider tackling GP.

One thing at a time, lovely.

😘

[Nonameme in reply to Narwhal10]

Thank you for your kind words more tears but in a good way😂.

[Nackapan]

As you are seeing the G.p soon ask fof B12 injections to be reinstated .Unless dietary all of us witn B12 Absorbtion issues need B12 injections for life at a frequency that keeps symptoms at bay .

Theh shoukd at least treat ig going by NICE guidelines.

Ask for a trial??

Thd ignorance is shocking among Gps.

Do not however wait to get worse .

You will receive all the information you need from Wedgewood if self injecting 💉 the way presently.

Get a print out of that last blood test .

Hope Gp. gives you s 'trial' so first b12 injection ax you've nog had one for years is in a clinical setting .

Hopd you get some relief soon.

[Nonameme in reply to Nackapan]

Thank you. I mention b12 almost every appointment but get the usual let’s wait and see etc. For 2 years I had gastro problems refused consultant so paid and he brought u

Up the anaemia and b12 but GP did not follow up

Last August I collapsed at home with rectal bleeding which turned out to be a nasty c diff infection and b12 noted as low and taken off PPI and dose of Metformin lowered and again discharged with low magnesium and b12 to be followed up. Nothing!

Unfortunately I live on Isle of Wight so only one hospital and no choice of gp practice as all are region so no choice.

I have cystoscopy on Thursday then have to travel to the mainland for a cataract operation in Southampton on Saturday and home same day! All when feeling I cannot put one foot in front of the other! But can’t complain bought lack os treatments

On the whole but you do feel you are parts of the whole which are never seen as one person with coinciding ailments which must affect each other!

[wedgewood in reply to Nonameme]

You will have gastro problems if you have B12 deficiency due to Low stomach acid caused by say Pernicious anaemia ,also know by the name of Autoimmune gastritis .( we also produce less stomach acid as we age )

Low or no stomach acid. ( Hypochlorhydria/ Achlorhydria) upsets the stomach flora and allows bad bacteria to proliferate, causing bloating and stomach pain . Correcting the stomach flora with probiotics like Symprove , probiotic capsules or ( my favourite ) home made kefir , will help the stomach flora . Together with the regularity of B12 injections that you require to keep the symptoms at bay , you will start to feel your normal self .

Certain drugs will deplete vitamin B12,eg Metformin is one , but there are many others . You can look them up on Google .

[FlipperTD]

Don't panic! The cancer pathway is a way of getting you seen quickly. I've had trips on the same bus.

Good luck, and be well.

[mountmuir27]

One of the earliest severe symptoms of B12 deficiency (PA) I experienced was cervical spondylosis. It hit out of the blue. I was working on a laptop and found I could not hold my head up. Severe neck weakness. I live in the USA and was able to immediately go to a Orthopedic doctor who confirmed this diagnosis via MRI and x-rays. Did physical therapy (PT) which only helped a bit. Research on possible causes led me to low B12 as a potential cause so I started taking oral B12 in mega doses and it helped. The fact I needed mega (10K+) doses to touch this symptom was a clue. My neck pain went away and remained gone after B12 even when I stopped PT. A few years later I was experiencing lightheadedness, extreme fatigue, balance problems, urinary incontinence - not simple vis a vis menopause mind you - rather if I jogged or walked fast I could not retain urine. Advice for you is given the fact you have 2 classic PA symptoms: 1. balance problems, and, 2. cervical spine atrophy, force the issue on daily loading B12 doses to test your instinct. What worked for me to get doctors to listen was claiming that I had a family history of B12 anemia. While this is true for me, and it might not be the case for you (albeit likely eg did your Mom fall a lot, early dementia?), family history is something a doctor can record and act upon without getting yelled at by healthcare management. They need us to give them a clinically supported reason to prescribe to keep them out of trouble. In the absence of 100% foolproof labs and given this anemia is tricky to diagnose, and symptoms are the main clue, tell your docs "family history with same pattern of symptoms" and you should be set. Keep us posted.

[Nonameme in reply to mountmuir27]

Thank you so much it has been like someone turning the light on. I have cervical spondylitis diagnosed several years ago and is the reason I was given Buprenorphine for pain as I had been referred to a Consultant for an urgent operation but he refused because of age without even seeing me! My gait is terrible people laugh at me and I laugh back and cry when alone I often stumble sometimes fall but luckily only broken a bone a couple of times and put down to being clumsy Now it is all beginning to make sense

Thinking back there are things that did not raise any alarm in the past but now the alarm bells are ringing with regard to elder relatives

I am taking all you say onboard and will be better prepared at next GP Meeting

Again many thanks

[mountmuir27 in reply to Nonameme]

Balance issues, for myself at least, became so bad I was scared to drive (age this happened was 51). 100% B12 deficiency. You are not clumsy! Clumsy = bump into things on occasion due to not paying attention. Falling and losing balance are not being clumsy. My hope for you is that your cervical spondy goes away once you start proper B12 treatment. Mine is gone unless I wait too long for a B12 injection and goes away as soon as I inject B12 2-3 days in a row and then every other day for a while. I do recommend you continue or start physical therapy (look up how to videos online) to strengthen the neck and shoulder area. It does help. Something else to watch out for and this was likely "end stage" in my case before getting injections is something called oscillopsia. The best way I can describe it is if you look at a star, or a speck on the floor (not a bug!), and it appears to be drifting to one direction, you need B12. As so many here share there are a myriad of symptoms. Tinnitus and hearing loss at a younger age is another common one here. Gastritis (weeks of diarrhea...great fun). Experienced both. Hearing loss happened at the age of 41-ish. Was told due to ear infections as a child. Had no idea it was, in retrospect, an initial symptom of B12 deficiency or PA. Until you can see a doctor consider large doses of oral/sublingual B12. I did and I am alive and fine, I promise. This is YOUR life. Remind your doctor of this. Do not lose any more years of living. Again...you are not clumsy. You know this.