Hi everyone. Don't even know where to start but I'll try to make it short.
I have celiac disease, pernicious anemia and chronic iron deficiency (iron infusions every 3months for years).
I was recently referred to a neurologist who told me I have permanent neurological damage. The burning, confusion, balance probs. aphasia etc. are all from permanent damage...
My question is, is it normal for those things to come and go or worsen w activity? Some days are worse than others. I'm just trying to understand.
Seems like permanent would be steady unchanging.....
I don't even know if that makes sense. Like I said I'm confused. 😥
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esteloca
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Are you on B12 injections? If not, ask your Dr or neurologist to start or increase your dose on a 6 month trial.
Neurological damage is only permanent when the axon is gone. You may be able to repair myelin sheath damage by a steady (weekly) dose of B12 and daily folic acid up to 5 mg (or whatever you can handle). It’s a balance between b12 and folic acid.
Start a logbook of all your symptoms. Some may appear to get worse once you get B12.
Thank you. Yes I've been on injections for over a year and a half now and everything did get worse for awhile but then started to improve. Most notably the brainfog, burning, pins and needles, and insomnia.
I did the usual weekly for 6 wks followed by monthly but that didn't last long maybe 2months. B12 was still pretty low after all that so I did biweekly injections for several months before finally getting them to let me go back to weekly. I'm also on 3mg folic acid a day and 400 units d3 for deficiency...
Now my symptoms have improved considerably but I'm weak all the time, chronic fatigue, less brain fog more random confusion I guess. For example : I'll think I'm having a good day so I decide to go to the store, get in the car, start it, put it in reverse and can't for the life of me figure out which way to turn the wheel to back out. Like my mind can only figure it out if I'm going fwd. Or I get lost going familiar places. The other day I spent 30 mins trying to figure out how to mail something bk in a provided envelope bc I thought I was supposed to write something on it but it was done for me and I just knew something wasn't right. Then it clicked and I was like wow that was dumb. Crazy stuff like that. I talk weird sometimes. Words come out wrong and sometimes I'm not able to speak right at all. My kids call hamburgers "dargenbargen" now bc that's what I kept saying when I tried to say hamburger. It's weird.
I still experience balance probs, burning and pins and needles but not nearly as often as before.
Oh and went from having really bad insomnia for years to almost the opposite - I sleep at night and have idiopathic hypersomnia (sleep study results).
Sorry for the long response just really trying to understand.
I was taking a multivitamin but I couldn't be sure it was gluten free & safe for celiacs so I stopped taking it. I also have trouble with decision making. I get so overwhelmed trying to pick the best one I end up not getting anything even though I know something's better than nothing. Trying to choose is too exhausting & none of my doctors know what's safe for celiacs so they won't prescribe one...
Short answer no I'm not taking a multivitamin.
My bp is up now because I've gained so much weight I guess but I experience sudden drops that make me pass out along with tachycardia, excessive sweating and other symptoms my cardiologist blames on POTS. He prescribed Midodrine but I'm afraid to take it (another topic entirely I know).
As for gluten and dairy, I've been gluten free (other than accidental cross contact) since Oct. 2017 when I was diagnosed with celiac sprue but I'm not completely dairy free.
Thanks so much. I'll cut dairy out too and see if it helps! 💖
The thing that makes the logbook work well is that as you write things down like the medications you are taking, the foods you are eating and the symptoms you are having, it becomes your short term memory.
As you try a multivitamin, write down and score your symptoms each day. If it has something that your body can handle, the symptoms that show up will tell you. It then helps you make decisions. Although, you become your own experimental guinea pig.
Give a list of all your symptoms to your doctor each visit. That way you don’t have to try to remember everything.
There are short term memory tests and games on the internet, I found one that was figure based and not letters and numbers, that I used to measure and evaluate how bad my short term memory loss was on a particular day. I wrote my score in the logbook as well and treated the short term memory loss as just another symptom to be measured. The short term memory test also provides a good exercise for your brain and triggers nerve repair in the short term memory section of your brain.
As you build up scores in your logbook, don’t try to compare day to day because that is like trying to monitor a roller coaster ride. Instead reset the logbook to day zero at each jab and compare the severity of the symptoms on day 3 to the previous day 3 or even 6 months earlier day 3 after the jab.
The symptoms in the days before the jab are from the deficiency and the ones in the 3 or 4 days after the jab are from repair of nerve damage.
You can monitor your energy the same way.
For me, getting gluten or dairy causes a sequence of symptoms like wind within 3 hours, a large poo the first day, but then brain fog 24 hours later, then constipation and finally another large poo 3 day later. Feel horrible the whole time.
I also use methylcobalamin sublinguals 5000 mcg to fill in daily as my cyano injection prescription is weekly which I self inject. These clear my head before meetings, and help me stay awake on my evening commute after working a full day.
You cannot overdose on B12 as it is water soluble and you pee any excess away.
I keep trying to get myself together enough to keep a logbook but get so overwhelmed with everything. Useful advice and tips if I could just get to that point. Thank you for sharing it all with me! And I'll get some sublingual b12. Why'd I think it wouldn't work for ppl w PA... It goes straight to the bloodstream that way doesn't it 💖
Sublinguals and nasal sprays are supposed to be absorbed directly into the blood stream.
I’ve never tried the nasal spray so have no experience there.
Sublinguals do help me but not enough to depend of them alone, so I need weekly injections. I find the sublinguals take about 10-20 minutes to start working and last about 2 hours (depends on my level or activity and stress).
Worry and stress just consume B12 and without a functioning recycling system in the gut, that B12 goes straight down the drain.
I really encourage you to just start with a pad of paper or an exam book for your logbook. Once you get in the habit, keep it nearby to jot notes down as well and it will help with the short term memory loss.
First thing is to admit that you can’t possibly remember everything and just start writing stuff down. The crazy thing is that long term memory is not initially impacted and so you can still remember some stuff but not others.
I had to ask my wife to write lists for me as well ( who ever asks for a honey-do list ?!) but I could not keep two things in my brain at a time at the lowest point.
I’ve improved significantly but still like colleagues at work to send me an email rather than giving me a call.
No. The B12. Ol vile is too large to pass across biological membranes unaided. That’s why all the studies comparing sublingual to oral show the same amount is absorbed.
I'm in the same boat and I'm horrified of the brain fog and to think I'm going to live all of my life like this scares me so much. How long were you defecienct before starting treatment? And if you don't mind me asking how old are you?
Hi Aaro. You're right. It is scary. Most days I wouldn't even be able to respond to these msgs. It takes forever to figure out what order my words and sentences should go in.
I'm so thankful for the good days and try to stay positive but it does get to me sometimes - & Dr's call that depression. I don't think it is though. Who would be happy about it?
Anyway, I'll be 38 in August and I think I was probably deficient at least half of my life because even as a child I was anemic and can remember my tongue being so sore I would cry but no one would listen. They'd say it was from something I ate. But that's just a guess.
In my early twenties I was diagnosed with moderate to severe peripheral neuropathy and told not to worry about it, it was probably hereditary.
Then years of severe anemia with blood transfusions, iron infusions and pills that made me sick. My IDA didn't improve till I got my b12 up and no one thought to check it till 2017. It was less than a hundred at the time.
The same thing was going on with my tongue throughout my twenties and early thirties so I don't know for sure but I assume it was a very long time... 💖
I know exactly what you're talking about. I don't go out anymore beacuase I can't talk and hold conversations with people. I even try to avoid phone calls because I just can't find the words and the worst part is that I'm just 21 and feel like 100. This thing has just devoid me from everything. I dropped out of college, fell into depression. Iv just started treatment and I feel like iv been defecienct for 2 years so I think there's some hope here. I wouldn't wish this on anyone but I wish you the best and hope you get better
Awww I'm so sorry to hear that! I've avoided things so long now but it got bad when I was your age. Dropped out in my early 20's after a couple semesters and never went back. I understand completely!
Hang in there though! I think it'll all get better. Just make sure you stay on top of everything. Keep your own records and keep coming back here for advice!
If something doesn't feel right, see another doctor asap. Don't allow yourself to put it off.
Sad to say but so many doctors are clueless and some don't even care.
You're already at the rt place and headed in the rt direction! Glad you figured it out early!
And thank you so much. Hope you get well soon so you can get on with the rest of your life! 💖💖💖 Take care and check in anytime you need an ear.
I'm afraid that nerve damage can often be permanent. Here's an article about B12 neuropathy that explains how difficult it is to diagnose. s3.amazonaws.com/academia.e...
The patients with PN and Cbl deficiency showed little objective improvement after parenteral replacement therapy; however, progression occurred less often in these patients compared with those with cryptogenic sensory/sensorimotor PN (P = .02).
So, it's not going to get worse.
My neuropathy is cryptogenic (the new term for 'idiopathic') which means it is slowly getting worse. Luckily, its very slow. I do find it can vary quite a lot from day to day. Strangely enough I can walk for a few miles with no problems. But if I try to stand around chatting for half an hour, or sit in the cinema for two hours, I'm staggering around like a drunk.
I don't think anybody knows what causes the mental problems associated with B12 deficiency, the brain fog, memory problems, irritability, paranoia, depression, etc. It could be something to do with nerve damage. I think it's more likely to be a problem with one or more neurotransmitters.
Thank you fbirder! I appreciate the link and look forward to being able to read more. Just trying to make it through the comments at this point lol.
Really interesting that you can walk around that much and be fine but can't stand or sit around for long! Guess like everything, it just varies.
Thank you so much.... I feel my long responses taking their toll. 💖
Your vitamin D supplementation is too low and not likely to help at that dose. Most people need 10,000 iu daily until nolonger deficient then a maintenance of around 5000. You might want to post your latest bloods on Thyroid uk as B12 definciency and iron deficiency often connected with thyroid health. Low thyroid hormones also affect brain function.
Thank you mandyjane. I'll try to post my latest results as you suggested -soon as I have the energy. I know I've wondered about that even though I know it's all within range. I've learned that within range can still be low. So much to wrap my head around especially now that my brain doesn't work right most of the time!
Oh and vitamin D.. I wondered about that too cause in the past I took 50,000 iu a week. 400 a day seemed low to me too. I'll try to increase it.
I am a bit like deniseinmilden in that we share symptoms and recovery patterns, and have taken her advice because of this since she has had this condition for longer and coped very well. This has worked well for me, but has taken a long time: I have now been self-injecting since September 2017, every other day and take a multivitamin and mineral tablet daily. The improvements have been so gradual that I have barely noticed the loss of some symptoms- until I read my 2016/2017/2018 diary- makes me feel wonderful (it's all relative).
I am also a bit like fbirder , in that I can walk for miles and miles, but cannot stand still for long. Legs start feeling shakey. Arms do the same if I am standing still : changing light-bulbs, decorating the Christmas tree. Muscle loss, feels like.
No naps, no 14/15 hr sleeps at night now, though. That makes a difference.
I did take folic acid and ferritin, because GP thought that bleeding gums and hair loss might improve. Levels got better for the three months prescription, then worse again. I took folic acid as well as multivitamins, so all in all, was on 600mcg daily for quite a while. Once folate levels were coming back as over 20ug/L (twice), GP advised to cut back so just had the 200mcg in the multivits. Mostly working fine: hair loss today was a bit much but have had a very busy time lately and managed quite well. It seems that once some symptoms have gone, return of minor ones seems a bit more disheartening.
Hardest to get rid of for me seems to be the memory and cognitive problems. Okay until not okay- like you said, not easy to predict. Sometimes I'm fine, then hit a wall: individual words will make sense, but not inside an entire sentence. Or need people to keep it slow,simple and very specific.
I am seeing an Adult Inherited Metabolic Diseases consultant in August: they have been looking at my DNA. Hopefully something will be found that could help me, and family and maybe others here (?)
The best advice I got so far from consultants was from a consultant heading an ENT department in a big London hospital, who told me I was doing absolutely the right thing in self-injecting frequently, that it would take a very long time but not to be disheartened, that it was clear to him from looking at my mouth that I had a B12 deficiency, and that yes, having salivary gland defects would of course also compromise my ability to extract B12 from extrinsic factor (ie: food)
- you just need one person in your corner, don't you ?
Now, I have plenty of people: that is the great thing about this forum.
Coeliac and PA is hard. I am coeliac and B12 deficient and it isn't easy. You have my sympathy!
After 18 months B12 injections every other day I am back at work though so there are improvements to be had.
Wahls Protocol is a good diet to follow.
Avoid any Friesian milk and cheese. Now I'm a bit better I can handle a bit of buffalo mozzarella, feta or sheep's yoghurt but not much.
Also avoid sugar, corn and too many potatoes. Corn gives me pins and needles. Not surprising with what they've done to it (spraying glyphosate all over it and inserting genes from snowdrops).
If you can get wild salmon then eat that for thr omega 3.
Methyl spray is good for brain fog and between injections.
Get a good B complex. B2 and B3 good for energy, B5 for burning feet. B6 as well
Seeking Health does one with no folate in and not too many additives.
Are you on magnesium? Really helped me. Started with cream on my legs at night but now I take 400 mg mag glycinate each day.
Need to keep your vitamin D up as well.
Don't fixate on the concept of damage, focus on rest and healing and if you keep tweaking the above I am sure you will start to improve
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