Some support please

[DocAJB]

I'm 1 week away from next injeciton and symptoms of muscles aching, pain, fatigue, and low mood are back. Know they will go away again but it's hard. I keep up a normal life and feel those around me don't really get it. I feel alone at times like this. Words from those who get it may help.

[wedgewood]

You have come to the right place at the PAS forum . You will find understanding here , which you will not get from the medical profession or the general puplic .

On the forum we know that PA patients need individualised treatment -That “ One size does NOT fit all “. You just need your B12 injections more regularly to prevent symptoms from returning . Yes, some patients are fine on 3 monthly , but many are not. I know patients that need daily injections to keep symptoms at bay . I need a weekly one . We are all different . You know when symptoms start returning . If your GP will not sanction more regular injections, you have to take your health into your own hands . You can get B12 injections at some beauty clinics . ( google to find out ) They are expensive . It’s convenient and cheap to self-inject .

Some patients find that sun-lingual B12 tablets help or nose or mouth sprays . Unfortunately they had no effect on me , but you coukd give them a try .

If you would like to try self injecting , you can get the information here . You can use either Intramuscular ( I.M.) 1inch needle or Subcutaneous ( Sub-cut) 1/2 inch needle methods .

Best wishes .

[clivealive Forum Support]

Oh dear  DocAJB you are certainly not "alone" with your physical feelings in the run up to your next scheduled injection.

You don't say what country you are in but as  wedgewood says is it possible to get the frequency of injections increased by your doctor or failing that self inject?

How long have you had the B12 deficiency? It is not unknown for the symptoms to appear to get worse before they get better as the B12 gets to work repairing the damage done to the nerves by the deficiency. It may take months, even years before the symptoms subside and improve.

Do you know what your Folate and iron levels are? The two work together with B12 to make healthy red blood cells.

I fully understand and empathise with you about "people" not "seeing" your illness as to all intents and purpose we look perfectly normal. I remember and know myself that I "lived in ignorance" of what was "wrong with me" until I joined the P.A. Socciety

I am not a medically trained person but have had P.A for over fifty years and am now coming up to 82 years of age.

I wish you well

[Rexz]

DocAJB, Regarding the B12 and injection frequency. I'm in the US and I have found the best for me is that I switched from Cyanocobalamin to Methylcobalamin and am self-injecting every fourth day.

I can begin to feel it when I need it. In fact I recently did an experiment on myself and stopped injecting and at the end of the third week Wow, it was like I got hit by a train. All my symptoms came back, It surprised me how fast and how much. I was at a store and I got completely disoriented almost blacking out, I just held onto the shelving and waited for it to pass like I used to. But it had been three years since I had experienced that. I immediately started injecting again and those symptoms went away. Now I am only a "sample" of me and we are all totally different. You just need to find your own rhythm which may mean self injecting. I have also read that Hydroxocobalamin lasts longer in the blood so injections are required less frequently. I believe, even with that, you need to find your own injection rhythm or routine that suits your specific wonderful human body.

Regarding your feelings of being alone, they are perfectly normal as this PA condition along with many other autoimmune diseases completely upends your life. The real challenge is that you mostly look normal to those around you but on the inside there is great turmoil, and isolation, and many unanswered questions. The advice I was given, on this very subject, some time ago by Kimberly Warner, founder and producer of Unfixed Media, was to communicate, communicate, communicate. As her unfixed logo says we are "not fixed but far from broken"

unfixedmedia.com/

To help communicating with your family on all the crap you and most of us are dealing with internally. Here is a link discussing the topic of "Who am I Now?" in autoimmune disease that I shared with my family to help them understand.

hss.edu/conditions_who-am-i...

That's the family issue but then there is the doctor or GP issue because mostly they don't seem to get it either. The best thing I was able to do was find that doctor, it took me 14 tries, that was willing to listen and I would take my research papers and educate them. They are now my partners in managing this lifelong condition. If you can do that it is a great load off your shoulders.

Best wishes, Rex

[Cherylclaire Forum Support]

Firstly, congratulations in managing to keep up a normal life - that can't be easy.

I leaned heavily on the people here for support and encouragement, information, links to research - and sometimes just a "yes - I also get that" is enough.

This is a difficult condition, with severity and frequency of symptoms much misunderstood, with impact on your life so underestimated by those there to help. I was very lucky with my GP : she did all the pushing for me, once she realised how ill I was.

That could not have happened until I realised how ill I was. I didn't even know there was a B12. I felt as if I was going mad while also dying slowly a bit at a time, unable to do anything, even that which used to be second nature because I couldn't think straight.

Inside my head, repeating like a mantra "let me think, please just let me think"

Now I get it. I understand it. I recognise what I need and when. It is manageable.

Don't be alone or afraid of asking about anything on here. Learning about B12 deficiency will help you and those around you, giving them a better understanding of what it feels like to be you now. There is a lot of information, and it is often complex. I think I started with a list of B12 deficiency symptoms - one compiled by people who are familiar with them, like the one on the Pernicious Anaemia Society website, or that compiled by Tracey Witty. I found it useful to have a checklist, to recognise how much of what was happening to me was simply due to lack of a vitamin.

I don't know how long you have had this, or what your treatment regime is or what symptoms you get. Have you had a diagnosis of pernicious anaemia or has B12 deficiency been identified without a search for cause ? If you think you need more frequent injections, it may help your case if you keep a daily chart of your symptoms (severity and frequency). If you are able to demonstrate where a pattern of symptom-return emerges relative to injections, an agreed trial of more frequent treatment could be a suggestion.

Not all GPs are open to suggestions, I know, so having a partner or friend with you can help. They can confirm, with their own observations, how you are currently faring. Just being there with you can make a difference. If you have memory or cognitive issues, even more important.

Note: Any neurological symptoms alongside low B12 means you should be on a different treatment frequency to start: every other day injections until there is no more improvement to be had by doing so, then every two months thereafter. Nerve damage can take a while to heal. These are medical guidelines for treatment, obtainable from NICE- the National Institute for health and Care Excellence, BNF - the British National Formulary, BCSH - the British Committee for Standards in Haematology.

[DocAJB]

Hi everyone. Thank you so much for your helpful replies. I have been diagnosed (PA) for a year and my treatment with gp is typical, every three months. I have started using salons to have additional ones but am finding I need one every three weeks otherwise I become gradually unwell again. Each time I seem to lose some resilience with the symptoms. I had a slow decline for about 6 years before diagnosis with GP.

I am going to explore the self injection route. I have been avoiding this but I am finding the cycle increasingly difficult. I have a full time job, and toddler. A lot of life I want to enjoy, ideally.

How do I go about ordering from germany?! Thank you.