Encouraging Stories, Please!

[jpar]

Hi. I was diagnosed with Pernicious Anemia 3 months ago and had loading doses and am getting 2 shots a week of 1000mcg of Hydroxocobalamin. I'm really feeling anxious and nervous that I will not get better, although some symptoms are finally starting to get better. I still have such a long way to go. Can anyone tell me their success and how their lives are now? I really need something to hold to. Please and Thank you!

[wedgewood]

Please don't get worried . It can take quite some time to fully recover , depending on how long you have been deficient . It's also important to have plenty of folate/folic acid to work with the B12 . I was deficient for a long time ( a couple of years I believe ) I would say that I'm 80 % better now after about a year of injections ( I self inject weekly) it has made a huge difference to my life . It's early days for you . Don't despair ! It's good that you have already noticed an improvement ! Best wishes .

[jpar in reply to wedgewood]

Hi Wedgwood, how much folic acid do you take?

[clivealive Forum Support]

Hi jpar I was diagnosed with P.A. in 1972, was told I had only two years to live - unless I either ate raw liver three times a day or had B12 injections for the rest of my life. I chose to have the injections and I'm still "clivealive" and now am over 75.

Have your Folate level checked as wedgewood suggests,

I wish you well

[Gambit62 Administrator]

I had 40+ years of anxiety and depression which was getting worse to the point where I was thinking that I'd need to reduce my hours and hence my income and standards of living. I was diagnosed by accident and then struggled for a year to understand what the diagnosis meant - I have now found a treatment regime that works for me - my anxiety and depression has cleared - I no longer wake up feeling disappointed that I didn't die in the night - I have moved to a more senior post and have quite an active social life - including helping out as an administrator on this forum.

[jpar in reply to Gambit62]

Hi Gambit62. Thank you for your response. Can you tell me what your treatment is that works for you?

[Gambit62 Administrator in reply to jpar]

I started by using a hydroxo nasal spray - 1000mcg 3-4 times a day.

routine does now vary - I self inject a few times a week but still use nasal sprays (a 2,500 mcg of methyl - and a sublingual for adenosyl - 3,000mcg.

That is what works for me at the moment.

It took me a few weeks to get my balance back - went from scarcely able to walk to being quite comfortable perched at top of a ladder pruning grape vine. Took a few months more before I realised the anxiety and depression had gone. However, this was after about 15 months of treatment by doctor that had just made things worse - and trying to learn about the condition for myself and figure out what that I needed injections more frequently than I was getting them.

[jpar in reply to Gambit62]

Where do you get the nasal spray? And do you take the nasal spray and sublingual daily?

[Gambit62 Administrator in reply to jpar]

I buy non-injectable B12 from a company called detoxpeople.

use daily - sometimes more than once a day

[Manda500]

Jpar I am in exactly the same place as you....I have just completed my 6 loading doses and although some symptoms have improved I am feeling extremely anxious as to if and when I will start to feel better. It seems so many people have to "manage" by SI and only then they start to improve....it's all just so overwhelming

Can I ask should I still continue with 400mg folic acid even though my loading does has finished (my folate level was 9 and doc said it was fine but I still took them as followed advice on here) I also take b complex and potassium rich foods. Thank you any advice welcome x

[clivealive Forum Support in reply to Manda500]

Do you mean 400mcg of folic acid? I've taken that amount for more years than I can remember because that and the B12 help iron to make red blood cells

[Manda500 in reply to clivealive]

Hi Clive yes sorry mean 400mcg! Do I continue to take it after loading dose? Thank you

[clivealive Forum Support in reply to Manda500]

Take them whilst you are having the B12 injected and have the level checked the next time you have a blood test

[Manda500 in reply to clivealive]

Thank you Clive

[EvieBe in reply to Manda500]

My functional doctor advised never to take folic acid (just folate) as it can interfere with the methylation process if you have the MTHFR gene variant (which apparently 40% of the population have.

[pitney]

Hi jpar I have found its not just having the B12 injections and waiting to feel better that works but working out what works for you as an individual, and that takes some time. Things like the amount of energy you use,diet, how you manage other health problems , perhaps how you manage other B12 treatments ,it seems to me they all play a part in how well you feel.Of course you may find that you improve straight away with just your injections, but if not don't give up hope keep trying until you find some improvement and work on that .Its taken me 3 years to start to feel more of my old self and i'm just about to start SI as I think that is the right way for me to go now, but everyone is different .

Do hope you start to pick up quickly, all best wishes

[Inee]

Compared to some others, my symptoms were fairly mild when I was first diagnosed quite some years ago. I was extremely tired and had great difficulty with my memory. I have since battled other ,I think unrelated, health issues but the B12 deficiency no longer causes me any problems. Pernicious Anemia is, as yet, incurable but, with the right treatment, shouldn't prevent you from having a good life.

[CH52]

Thank you, thank you, thank you!!! I am very much in same boat and I needed this as much as originator of this post, "jpar", I've had my first 2 days in a row high energy days! Might have over extended myself but I felt great getting my gardens weeded, mowing my lawn and reblazing my property lines. I have come to appreciate these days and when the low energy days hit I know it's only a matter of time and I'll be able to do the necessary things like hauling water or home maintenance that my semi off grid lifestyle necessitates. I'm learning to roll with the ups and downs. This forum has been a lifeline for me and the positive help and encouragement is what gets me through my bad days or the days I'm frightened I'll lose my independence or ability to take care of myself and needs. So jpar, there are many people like us just starting on this PA journey and there are many like Clivealive and Gambit62 and many others who have become my angels in keeping my morale up and a source of hope so I can continue to get up and face what each day might bring!

[jpar in reply to CH52]

Wow CH52, that's exciting to have some high energy days! Good for you. I cant wait to say that again. I hope you continue to have more energy days and I look forward to the day that I can build someone else up when I have been successful. Thank goodness for all of you! I just don't seem to get any support from the doctors and their lack of knowledge and understanding of this disease, especially the emotional part is shocking. I have to keep coming back to this site to tell myself I'm not crazy and things WILL get better. Every doctor that I have seen just wants to give me an antidepressant and they don't seem to acknowledge the anxiety being from the pernicious anemia.

[CH52 in reply to jpar]

hi jpar! This PA can make you feel crazy that's for sure!! We are not alone in this journey. I am fortunate that I have a kind and understanding hemotologist who I now see more than my Internist. Since joining this forum I took the time to read up on PA and am trying to get a stronger understanding on the complex workings of our body's ability to manufacture blood. This has helped me to ask good questions and understand answers better from my doctor. He is actually surprised at my questions now and we have good sessions regarding my concerns and treatment. I started out not even knowing what neurological meant! I'm 65 years old and up until this anemia hit was strong as An ox! I decided , after reading the posts on this forum, that I needed to get myself as educated on this disease as I could. I want to be as up to speed as some of the others in this forum. I initially felt so out of my league and quite "ignorant"! Plus the not knowing was even worse so there you go! Oh just one more thing: the post from Pitney says it best: "we all respond differently..."

best wishes to you !!

[jpar]

OMG!!! Blessings to all of you and thank you for responding! I to have days where I Almost can do normal things with rest inbetween tasks and then "bam" I am bedridden for a day or two or three and feel like I'm sick, fatigued and can't think straight. And that's when the anxiety and depression hit the hardest and I think I can't do this anymore. Several of you have mentioned folic acid. Several days a week I take a multi b vitamin, but not folic acid on its own. How much folic acid do I need and what type? Also, I read somewhere that we need vitamin b6? Is this correct and how much? Anything to get me closer to normal. Thank you!

[EvieBe]

Hi jpar. I too am just starting out. Awaiting blood test results from a private/functional doctor (after years of not getting anywhere with gp) with extreme tiredness, depression..and increasing joint pain/stiffness. She suspects I will need b12 injections. In the meantime she has been advised to completely avoid folic acid (and to take folate instead) as folic acid could worsen symptoms as intereferes with the body's methylation process if you have the MTHFR gene mutation/variant which apparently 40% of the population have.