My spine has demylination, I had dementia, I have terrible brain fog and I have mild POTs now. I have gut issues now too.
I'm having such a bad day today and I am seven months into regular injections and I have this gut feeling that I'm going to be stuck like this forever.
My body and brain feel numb inside.
Days like today my heart goes up from a sitting position of 72 to 90-108 upon standing.
It makes walking feel uncomfortable and white marks form on my legs.
I don't think I can learn to live this way. I am trying so hard every day. I can't get used to this..
I can't believe something so terrible happened to me and that my life is over at 35.
I feel completely hopeless and don't know how to continue living this way if my issues don't get any better.
Is anyone else stuck this way? How do you live like this?
I feel so completely devastated.
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SickNessa
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I’m sorry you feel so down right now but at only 7 months in you will still be healing, it can take a long time. I had hardly begun healing by 7 months. I hope this gives you some reassurance that you will continue to improve.
If you look at the PAS symptom list, I had all of them. I was diagnosed two and a half years ago, serum b12 58, IF and PC antibodies both positive. My biggest struggle has been trying to get my surgery to agree to enough injections, in the end I got my own supplies and self inject. How often are you having injections?
Yes because healing isn’t linear with this and it’s sometimes only looking back that you realise that you have made progress as nerves can be very slow to heal.
If you think you were doing better with every other day, go back to that. I started with every other day and then had to go to every day. It's been 20 months of injections for me and I have only managed to get down to 5 injections a week -- even then, my symptoms start to return after I skip a day. I am 40. It is hard to accept that I will be dealing with this forever. But it is orders of magnitude better than the time before diagnosis when I was certain I was going to die. To to find joy and gratitude on those normal days. Get good at self care and try to avoid stress and overexertion as much as possible. Try injecting more frequently and see if it helps. Hang in there and try to believe that it will keep getting better. ❤️
Oh, and you can look into AIP (autoimmune protocol) for your gut issues. It helped me tremendously. Having one autoimmune disease also makes it more likely that you have or will get another; changing your diet and lifestyle could help in numerous and unforeseen ways.
It was when I felt I was dying in February last year that I took my treatment into my own hands and started EOD injecting. Recovery continues slowly with short term memory fine and long term growing back more and more as indeed all the other many symptoms fade away. I am very angry at the incompetent treatment yet I understand its because medics simply do not know enough about PA and clinical commissioning groups have sought to set aside the BNF guidelines to save a small amount of money. Thats why the work of the PAS is so important.
It is definitely hard to let go of the anger, knowing we have suffered needlessly, physically and emotionally. I am so glad at least that the treatment is an accessible and affordable one. Grateful to PAS (wish there was also a US version) and the people on this forum. Wishing you more healing every day. ❤️
I don't have any close family. Just a distant sister and my husband who just doesn't know how to handle this. I feel sorry for him I can tell he is stressed and confused.
What seems to hurt most is the lack of understanding in the medical community, or from those around us. It is such an interior thing, so no-one can really understand it but you. Or others like us who have a good idea of things.
I was also a late one but due to the pandemic and delays to testing I just couldn't wait anymore and began self treating. Of course I've no diagnosis now, no treatment and so almost everyone thinks it's an anxiety disorder.
I'm 4 months in but I picked up some major damage along the way. Some of that has healed, thankfully, from daily SI. But I've also had an electric charge in my spine which keeps coming back and I suspect has left me with partially paralysed legs. Whether they will heal or not remains to be seen, but it's extremely disturbing as a thought. And I'm also not that old (early 40's).
Try to find ways to pull yourself out of the void this can suck you into. It's not easy. Take a walk, see a movie, get outside. Most of all, make sure you sleep as well as you can.
It may take more time, but don't give up hoping. Keep taking the B12 and let it heal you in the way it needs to. If you need more, take more.
In the meantime, see this as a temporary phase. It will pass, in the end. And when it does, you'll look back and start to accept the reality. For now, you're still healing, so give it at least 1 year and forgive yourself for being 'SickNessa' for now.
I can empathise. I know it's very hard. My wife has had enough of my endless anxiety, panic attacks, stress, impact on work and continual need for reassurance. but my physical condition is terrible, in the last few weeks my legs have atrophied, are weak and I'm scared I'll end up in a wheelchair if things keep going this way.
My nerves have taken a real bashing and I can't see them coming back.
So what am I left with?
But you have to have hope. It is a hard blow. But your life isn't over. It's not a terminal disease or a chronic condition like MS or MND...you will get through it. It will be better, in time.
So you're not perfect, you're not the person you were, and life may not be exactly as it was, but if you get through this and feel well then imagine how strong you'll be?
You got through a serious, debilitating condition that floored you. Completely. But you kept strong and hopeful and did everything you could to get through it.
You may have the odd bad day. But you'll savour the good ones when they come.
Keep going. Do not give up. Take more B12 and hope it will heal you.
Don't fight it. It's very very hard. But give it 12 months and then take stock.
No. I'm now almost eight years in and can truthfully say it took a year or so before I felt like I was getting back to normal. I'm still not 100% and probably won't ever be again but I'll take feeling 90% for the majority of the time as a win. Still have my bad days but I know now that they will pass. We've all been where you are, in our own ways, and we can all say just take heart and continue your treatment and you will come out the other side.
Yes, they get less bad (if that makes any sense), and don't happen so often any more. And it helps once you've had a few and realise that they come, but they also go! there is a light at the end of the tunnel, it just won't feel like it yet for you but believe us when we say that you will improve, in your own timeframe
My bad days have gotten a little better, I'm hoping they keep healing because they are still debilitating. My good days I'm like 80 percent better. Bad days are like 70 percent.
I started healing immediately and all of my symptoms have gotten somewhat better and many have disappeared.
I'm just hoping for better good days and bad days being better.
My bad days I have terrible mental health issues, feel hopeless and feel pressure everywhere I used to feel pain.
My heart issues are the most concerning to me.
I had POTs so bad on onset. Like randomly my heart would start beating insanely fast. And my heart beat would be so messed up I couldn't walk from one room to another without being exhausted or feeling my heart beat too fast and having a panic attack from it.
Now my heart doesn't go past 108 when I stand, but when im sitting it's like 66 or in the 70s which is still a huge leap.
I'm chalking this up to autonomic dysfunction.
I find it's really hard for me to focus on my good days.
Would you say that it's safe to say that because all areas have been healing so far that they might continue to for a while?
I read some studies on TBI today and how some patients with that heal completely, and that how for some it can take them as long as seven years.
You were undiagnosed for a very long time so yes, it will probably take a long time to recover. I don't know how many of us with PA ever make it back to 100% and it's life long treatment but, for me anyway, as long as I don't feel like I did when I was diagnosed and in the early phases of treatment I'll take that as a win. As will you, once you're past these early, darker days!
It is incredibly scary, but you're getting treatment and you will get better, slowly but surely. Do something every day to get away from it whether it's TV or music - immerse yourself in that and forget what you're dealing with. Your husband sounds like he wants to stay which is great - maybe get him involved in helping you to read up on all the links you've been sent - whilst you've got brain fog, that would really help you and it may help him too. If you track your symptoms daily in a diary and what you eat/injections/activities etc, you may gain insight on what works for you. We're all sending you virtual hugs - keep talking and rest when you need to.
You will definitely keep improving.It took me 2-3 years to start to feel like me again.
I self inject twice a week alongside GP injection every 10 weeks.
Felt absolutely wretched at first, got bluelighted to hospital twice during recovery.
whilst your body is repairing itself you do start to feel worse which can be extremely worrying and because you get worse at first you feel that things will never get better, but they do. Hold in there, seven months is too early really. recovery from severe b12 deficiency is long and slow but does happen eventually to a level that will enable you to live a better quality of life than you do now. try not to let it stress you and see it as a long game, you will get there eventually.
Hi, if you're not able to move around much at the moment, you can still exercise your legs and buttocks by clenching the muscles and releasing - it'll help keep them strong. If they're not responding, touch the muscle you want to move and see if that can help your brain make the connection - I have to flick mine to get them to respond some days!
Hi SickNessa,Sending a virtual hug. I am so sorry you are having such a bad day and you have such symptoms.
I’m 11 months into treatment and SI frequently. I take other supplements which I have felt helped with orthostatic intolerance. As Nackapan said take a multivitamin. I still have to pace my day, get nerve pain, leg muscle weakness etc etc but compared to last September it’s huge progress.
Today, I’m having a duvet day - no choice really. I hope you’ve got some lovely friends or neighbours.
You could also look at Curable which is an app. Unfortunately, panicking about what’s going wrong can make the situation worse (hard not to I know). Curable explains a lot about how pain works and what we can do to help ourselves heal.
I was in a very similar position to you - could barely walk or talk - but with daily injections of 1.5mg in 1ml hydroxocobalamin and lots of supporting supplements I have made a good recovery. I'm not super well because of other unrelated problems but definitely don't despair - just get the level of treatment you need to get well.
I'm really sorry but I have run out of time now and must get to work but you can look through my other replies if you like by going to my profile by double clicking on my name and looking under the heading "replies".
Chin up and fight this! You can be reasonably well again!
It's good to take a broad spectrum multivitamin and mineral supplement (basic supermarket A-Z ones are as good, if not better than, more expensive branded ones) to give you a basic background level of everything you need in balance.
Then ask for blood tests for folate, potassium, magnesium, iron and Vit D and if you can't get enough from your diet (by far the best source) to maintain good levels you can add in specific supplements to stay towards the upper end of the blood test ranges.
That way you will give your body the main ingredients to support the B12 - which also has to be at optimum supplemention levels (ie you continue to improve without slipping back too much) - to repair the damage you have sustained. Keep that up carefully and you will be amazed how much improvement you will get - for years to come!
Pleased to hear you're feeling a bit better today.
A fb group told me I needed to take 5 mg of folic and a b complex to get well. I did that for the first month and felt great until I realized I had a sensitivity to b6. My gut tells me the folic is too much too.
Do you know anything more on this subject?
Thanks for being supportive. I really really appreciate it.
My bad days have my brain feeling so bad.
I'm new to this diagnosis and I have so many questions. I want to learn as much as possible about what happened to me.
There was a post a couple of days ago (or yesterday?) complaining about the misinformation that the Facebook groups give out. There was one good group about 5 or 6 years ago but various factions, some with extreme rather than accurate views, have split off and set up their own groups and I think that a lot of the original, good people have generally got well and gone on to live their lives rather than getting involved in arguments with the extremists!
Taking up to 5mg folic acid is OK in the short term if you have a known deficiency, confirmed with blood tests, which you are trying to redress, but the blood tests should be repeated at least every 3 months to see how effective the supplementation is being and determine what point you can go back to a lower level of supplemention. If you don't need it then it is inappropriate to take it at that level as it can cause problems by unbalancing things.
A broad spectrum multivitamin and mineral supplement is much better than just a B complex as it supplies all the main nutrients you need in a balanced way to compliment your diet, not just one group of vitamins. You will be able to tolerate the nutrients in a multivitamin and mineral supplement, especially if you take it with your main meal, better than any individual supplements or complex, purely because all vitamins and minerals are interdependent and your cells usually need the right balance of everything to work properly. Too much or too little of anything puts everything out and you end up feeling as dreadful as you have been.
I'm qualified as a nutritionist and it's logical enough to anyone but several years ago I said this on one of the Facebook groups and was treated like I was suggesting treason so I too gave up! 😀
Because B12 and folate are both what is known as methyl donors and they work together, if you are injecting B12 fairly frequently it is often necessary to take some additional folate, beyond that supplied by the A-Z multivitamin and mineral supplement, but usually normal 400mcg (0.4mg) folic acid tablets are enough. And if your blood levels do start to drop on that amount you can always take 2 or more to meet your needs.
If you need to inject frequently and have a lot of damage to repair then you may need additional potassium, magnesium, iron and Vitamin D, in addition to trying to get as much of these as possible from your diet, but you should only supplement with these very carefully, to balance your needs as shown by blood tests, as too much can be as much of a problem as too little.
If you get the right balance of everything you will get better at the quickest pace and this will address the anxiety problems, the bleak feelings and pretty much everything.
Please look through my replies to other posts and the comments by other excellent contributors on those threads to get all the information you need.
And please ask more questions too!
This is a lovely group and someone will always try to help you. x
You are feeling improvements which is fantastic 👍 such a positive sign 😊
You say you are injecting twice a week so I take it you are self treating? Any reason why you stopped every other day? You can't overdose on b12 & if you have neurological symptoms you should stick to every other day until there's no further improvement.
How are your folate & ferritin levels? Are your potassium and magnesium levels ok? Once on b12 treatment these can drop and being low in any of these can make you feel quite unwell & will hinder your recovery...worth having them checked it's important they are all optimum.
Is your vitamin D level ok?
It can be one step forward & two back but don't get dispirited...keep on keeping on 😊
I have been through something similar. The worse thing was my negative thinking. I also found mediation helps. I was a complete skeptic when I started. But I was desperate. My high anxiety levels were causing negative thinking that was dominating me, making me doubt that I would get better. It was fueling a destructive cycle. After a few weeks of 'daily calm' podcasts I noticed that I was feeling much more less anxious and I believe that has helped my recovery. Mind over matter.
I don’t have much advice to offer but I can tell you that it took me a year to get to a point where I felt reasonably well again.I’m now 3 years into treatment and have continued to improve over that time (with some backwards steps when I have increased physical activity) and would say I’m basically back to normal although I still get some brain fog but it’s nowhere near as bad as it was.
So I’m no medical expert but at 7 months in I was definitely still feeling pretty bad much of the time and progress felt very slow, so definitely don’t give up.
How long did you have symptoms for prior? I had so many that crept up for year and then things were awful toward the end.
I almost died.
I couldnt hold down food, was full from one bite, had dementia and schizophrenic thoughts, had dissociation and food aversion and ocd. I couldn't walk from one room to another without my legs tingling up to my knees, my limbs going numb and my heart beat getting do high upon even standing from POTs like issues.
I had burning pain in my spine and sunburn feelings all over my torso.
I couldn't walk into a store without getting confused about where I was and getting upset. I had no emotional control.
The worst migraines and insomnia and I couldn't control my temperature and would have days where I'd go the bathroom constantly.
My acid reflux was so bad I'd have terrible gas pains that felt like I was having a baby.
I’m honestly not sure how long the symptoms built up over as I didn’t realise everything was connected until after I found out I was deficient but it was definitely well over 6 months, it probably was about a year.Mine doesn’t sound as bad as yours but by the end the worst thing was dizziness, feeling unstable on my feet and occasionally feeling like I was going to faint. I also had anxiety, palpitations, dementia, pins and needles, mood swings and blurry vision. It’s a horrible thing.
You sound like me. I had a lot of your symptoms. But B12D made me very apathetic. I just didn't have any energy and I couldn't be bothered to do anything about it. My partner kept telling me I had something very wrong with me and go to the doctors. I wouldn't go. I was very paranoid. Then I collapsed, was unconscious for over 30 minutes, and when I regained consciousness, couldn't walk or talk for over an hour. To cut a long story short I gradually recovered my powers but I was in a dreadful state until I started on B12 supplements. I then became 80% better in less than 3 days. This was last April but I am still a work in progress. I still have POTS but it is much better. I still have trouble with my balance. I can only go down stairs one step at a time or I will fall down the stairs. and I still have reduce motor ability in my hands. But although I still get very tired I can function normally. And I'm sure you will too in time.
One of my main problems is that now-a-days I get easily stressed. It depletes B12 so I try to minimize it. Meditation ( mindfulness ) really helps with stress. I have always pooed pooed this sort of thing in the past. I am very logical. When I started I was sure it wasn't going to work. The first few sessions were a period of settling in because I was so skeptical. But it worked. It only takes 10 minutes a day.
I had the food problems you have. I have since found that I am also gluten and dairy intolerant. My gut problems have now gone away. I was also really nasty to live with. When I got better my partner actually cried. He was so happy to get the old me back.
Just one last thought. My healing speeded up quite dramatically when I upped my B12 supplement levels.
My heart goes out to you. I really hope you start a steady improvement. Are you getting enough potassium, folate, iron, magnesium? To help with the healing process in all of your systems? I have found it is really important. My iron was pretty low, but not below range, when I first had loading doses. And my folate was only just over bottom range. The GP hadnt mentioned either of these so I wasn't supplementing. After initial feeling good from loading, I quickly felt worse again, it seemed to really zap my stores and I felt awful with iron-deficient symptons. Now I supplement folate & gentle iron (Spatone, Floradix or Ferroglobin), & try to get more potassium in diet, & taje magnesium as well as using a spray on legs/arms as & when, and it all helps a lot more.
I am also trying some "gut healing", to try and help from the inside out, but havent been able to it consistently enough yet. Bone broth, gelatin, good bacteria. I found a good easy to follow approach that's based on trying to tackle allergies in kids, but its applicable to all who want to improve gut health.
I have only really done the broth part so far tbh, as have had other stresses to deal with. But I do think it has helped a bit already. Might be worth trying. Bone broth has long been considered a natural 'medicine' for all ills in most cultures.
Fingers crossed for you, keep going, I am sure it will all gradually improve for you.
dear oh dear. I am so sorry experiencing this. What was your neurologist doing by now. a completeidiot. are you in pain?l ife is always for living, but such discomfort? you can DO ONLY YOUR BEST. wecannot manageit every day. I am in the process of appealing my half slashed pip.unheard of.I have a progressive disease, that ONLY WORSENS, no chance of getting better.and she technically disregarded my neurologist and decided.NEVER SEEN ME, BUT assessed based on what exactly?she indirectly made him a liar, and herself an utter so and so.and now cannot employ a cleaner, cannot stand and clean my fridge... for longer, like healthy people.I am absolutely disgusted. I am in need of a help and made to be seen as if i am an utter liar.Instead of clamping down work shy lazyarses, who are constantly dying I am legitimately long term ill and toook advantage of.as if I can work. they need to sharpen up a bit and target others...
I'm sorry you are feeling so low, but it is a long journey to feeling well as first, you have to build up your B12 levels again, then you have to start to heal and find your balance. You may also benefit from looking into the Auto Immune Protocol. You have to be strict at first but the benefits can be seen quickly for most people.
aha.anything better than pain.one of the things I used to notice when STILL going to ospital my neuro appointment, docs were split between in paiin patients and NO pain patients.as having ataxia and NO PAIN, now I understand.
Sorry to hear about your situation. Please know that lots of people have made significant progress in recovery well after 7months. That was the case for me. My recovery was also delayed due to initial inadequate treatment but even with adequate treatment I continued to recover over about two years. At my sickest, I was very symptomatic. I have never taken an antidepressant before but I did take one for about six months when my second round of treatment began because I was suffering so horribly—constant anxiety with no let up. It was torture. I felt like I wanted to jump out of my skin and didn’t know how I would get through a day. My neurologist told me that it takes a full year for the brain to recover from low b12 so she wanted me to stay on the antidepressant for a full year of b12 treatment(I didn’t begin the medication until six months of b12 treatment). I was starting a job and needed to be able to function. I took a very low dose that wasn’t even therapeutic level but it helped my anxiety tremendously. I discontinued it when I felt better and no longer needed it. If you are suffering mentally, please don’t hesitate to reach out to your doctor for help. I suffered too long and wish I’d taken the antidepressant sooner rather than suffering horribly the way I did for months. You will feel better but I don’t think any of us on this forum will ever feel 100% even with adequate treatment. There are ups and downs. PA can be difficult to deal with even in the best of times. All hope isn’t lost. Hang in there and be patient but if you need a medication in the meantime to help you tolerate your symptoms, you should get that help you need. I wish you the best in your recovery journey. Try to stay positive. You will get better but it’s going to take some time.
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I'm new here so I hope I'm doing this right. I
Hope needed
Newbie with some hope and a couple of questions!
What is supplies run out?
Hacking the B12 Injection Hurdle (I hope)
