Hello everyone, I was told I have B12 deficiency with no IF as of 3 months ago, but that I was not anemic. Although I have been anemic in the past. So I don't even know if I can call it PA since I am not anemic. I'm confused about that and it appears I'm confused about a lot. I SI everyday now. It seems to be helping more now that I have the single dose ampoules. I was only giving myself 1/4 of what is in an ampoule.
My question is, I was wondering if anyone has unexplained bladder control, leg weakness, lower abdominal bloat and pain from hip to hip when you bend, and back issues leading to weak legs? My left heal is so painful I could not walk for three weeks. I am just starting to walk without crutches in small doses.
I just had a Lower Lumbar MRI with and without contrast. There is lots of mild to moderate issues going on but my doctor says that none of them can explain any of my symptoms. I'll post the results in case any of you can decipher them. He said he has done all he can for me and wanted to refer me to a tertiary clinic. I think I just lost the best doctor I ever had. He mentioned places like Mayo clinic here in the US. But I was so upset that none of the issues that are wrong with my spine are causing my symptoms, and that he couldn't help me anymore, that I said I was done and just can't fill out another "where does it hurt" form. I just can't put myself through this anymore. I already know they aren't going to find any explanation for my weird symptoms.
I read that PA can damage the protective coating on nerves. If that is possibly what is wrong, would an MRI test show that kind of damage? Is this part of the neuropathy? Is this all a part of having PA?
If I was going to invent symptoms, I would make sure they made sense. LOL Maybe 3 months just isn't long enough for the B12 to work yet. Maybe I just need to be patient.
Anyway, thank you for being here to answer my daft questions.
FINDINGS:
VERTEBRAL BODIES: No acute compression deformity.
Multilevel anterior osteophyte formation. Degenerative Modic type
endplate changes L3-L4.
L4 and L3 vertebral body hemangiomas.
INTERVERTEBRAL DISKS: Mild loss of disc height with desiccation L3-L4.
CONUS: Normal in signal and morphology, and is located at L1-L2
Axial images were obtained from L1-L2 through L5-S1. Level by level
analysis yields the following:
T12-L1 (sagittal views only): Unremarkable
L1-2: Unremarkable
L2-3: Mild disc bulge. Mild spinal canal stenosis. No significant
neural foraminal narrowing.
L3-4: Diffuse disc bulge indenting the ventral thecal sac. Mild to
Hubby has problems from L3 4 and 5, but not so much with disc but with nerve coming from this area, and he is suffering with all the same symptoms you describe. He has improved slightly as he can now walk (roughly 9 months of treatment B12 and Steriod injections).
Bladder and bowel control a lot better, leg pain very much improved. So I would say yes 3 months of treatment may be not be enough.
I had problems years ago same thing ... kept falling over and slipped a disc and had operation... now fine.
You mention would MRI show nerve damage ... this is how hubby nerve damage was diagnosed (demyelination). Nerves coming from disc appeared Black in this area only! I am no expert, but I would guess your problem is mainly disc and spinal problems, but will improve it unfortunately takes time and patience.
Gentle exercise (walking) to start strengthening muscles etc. Not easy by any means and you will get set backs.
Hubby has spent last fours days mainly on the sofa after setback. ...... wishing you a speedier recovery !!!
Thank you sooooo much Sallyannl! I am sorry your husband had a set back. I hope it doesn't last long. As long as I know you all say this is normal, I can deal with it. It helps so much to know, this is normal. Thank you so much! Good luck to you and hubby and continued relief. I am so glad your operation helped your back.
OK Thank you, Nackapan!! PA then. Everything is due to the PA. I hope your daughter is doing much better now. Yes the test do rule out stuff. I should be glad my MRI ruled stuff out. Just so many more questions. I don't know how to talk to my doctor about this. He said he has done all he can. We live in a town of only 187 people. He is overwhelmed by me and this. I will just get my ques from here. You all seem to know way more than the docs. I will keep going! Thanks so much! I feel so much better. I do take a folic acid pill every day with the injection. And I do take a prescribed D3 once a week.
PA is a bit of a misnomer - it isn't a blood disorder - its an auto-immune gut condition that destroys the mechanisms that allow you to absorb B12 and to access B12 stores in the liver to regulate B12 levels in your blood. This leads to B12 deficiency. One symptom of B12 (and folate) deficiency is a type of anaemia in which red blood cells are larger and rounder than normal but this isn't present in at least 20% of patients when they first present. B12 is used in a lot of processes that go on in your cells so the affects of a deficiency affect a number of things including nerve function. The effects on the autonomic system include urge incontinence. It can cause peripheral neuropathy. It can affect memory and brain function. It can cause muscle weakness and can cause tiredness and lethargy.
PA (and other B12 absorption problems) can affect absorption of other vitamins and minerals - most commonly folate and iron. Iron deficiency leads to a type of anaemia in which red bloods cells are smaller than they should be. It is possible for anaemia caused by folate and B12 deficiencies to be masked by the anaemia caused by iron deficiency and vice versa.
Gambit,62, it is funny you say that it is not noticed. It actually was noticed but no one thought it was important. Last year, like I wrote below, I had blood drawn before radiation treatments and they found diminished, enlarged, RBC and oval shaped. But it was dismissed. I have an appointment with my cancer doc on the 15th. I will bring this up. Thank you very much. This answers why my gut is in such bad shape.
Enlarged blood RBC ..... I had to go to ENT specialist , had problems swallowing..... he remarked that my blood cells were also enlarged .... again this didnt trigger any alarm bells .... perhaps it's just one of those things not recognised with some medics.
Yes I am all right, and in time you will be.We like the rest here are all victims of ignorance !!
Gut problems go hand in hand with PA.
Let's
🙏 that one day the medical profession take it seriously.
I use to think it was me who couldn't communicate with doctors ..... that's the one thing in sharing our problems we find out we are not alone. It would be so much easier if others understood too !
Amen!! My gastroenterologist actually said to me after looking at my b12 levels, after I'd been injecting, and said, you're fine now, see, your b12 levels are at 1500. If you guys here hadn't told me to disregard those numbers, I would have been very confused and would be second guessing myself. I have an endoscopy on the 8th. That's my last scary test. 🤞🤞 together maybe all our cries will be heard. It's only been 100 years. Maybe they need more time.
Had two endoscopy's, both gastritis. Both tests before PA treated ... so hopefully 🤞 now you on treatment you will have better result. Simple procedure but I did have mild sedation, I remember watching the screen. Dont fret about it Will be over in no time.
Well I'm glad they found what was bothering your stomach. It's frustrating when you think they found the answer and it's not. Yes, I have had some improvement. The pain under my right ribs has subsided the pain from hip to hip has right now subsided, but if I overexert myself it comes right back. My brain fog is better. My insomnia is not. My hands are much better! they don't hurt anymore but when I was not taking my B12 every day they would start hurting right away again. I never had an endoscopy but I've had a lot of colonoscopies. Mostly, it's the results that scare me. Not really the procedure. I would love to watch the screen. I watched my breast biopsies, it was awesome. I love that stuff. If I had a zipper on my abdomen I would be looking in there all the time. Hahaha
Love it ! It's quite interesting seeing the probe go down, it's hard to believe it's in your body !! !
INsomnia Questions .... Do B12 Injections make you tired ... if so have a few hours before bedtime, if not have you tried calcium/Magnesium.
A little bit of cheese, and magnesium (epsom Salts)
Or magnesium Body lotion especially on the thighs, (in UK you can get Magnesium body lotion with lavender) it could even help with frequent bladder at night !
I do my v12 in the morning. I'm not sure if it makes me tired because I only sleep about 5 broken hours a night. So I'm always tired. Maybe I should inject at night and try it. Maybe it will absorb better while I sleep.
I never heard of magnesium lotion I will Google it and try it. Thank you!!!
Thank you, Nackapan!! That's great that you're daughter has you. And I'm so glad her test came back clean. Yes, I will take every test I can. If for nothing else but to educate myself and any doctor's. I'm lucky to have a friend that is a nutritionalist. I will talk to him. I'm a big advocate for Pro and prebiotics as well as enzymes for digesting. I feel they save my life many years ago. Good luck to you and your daughter!
You can have PA without having Anemia, which relates to the number of red blood cells, which is different from lacking B-12, which is nothing to do with the blood but the stomach and its inability to absorb B-12
Thank you music 501!! When I had my blood drawn for the breast cancer, they found that my blood cells were lessened and enlarged and oval shaped!!! But no one did anything about it. They just made me sit for 20 minutes and then decided it was OK to continue with my radiation treatment. And that was that. I didn't know I had PA at that time.
Hello - sorry to hear all of this, it must be so hard to deal with.
I am not an expert (!), but I noted a couple of things. You mentioned anterior osteophytes - well they are also part of ankylosing spondylitis (which I have, as well as functional B12D) - have you had an MRI or X-ray of your sacroiliac joints (in pelvis), as this can often confirm ankylosing spondylitis (there are specific changes that happen to your SI joints). Ankylosing spondylitis can cause major back pain, and pain / stiffness elsewhere.
Anecdotally, my ankylosing spondylitis tends to get worse following on from B12 injections (lots more pain and morning stiffness) - i have a theory about this
Secondly, regarding your spinal stenosis, have they definitively said that it is not causing you problems? I also have spinal stenosis (around L4/5/S1), which has caused me major problems at times- usually when I have been putting my back under pressure, causing a bit of a disc bulge (which wouldn’t normally be an issue, but compromises the nerve a bit when it is near the stenosis). This can happen after things like childbirth (!), sitting on soft sofas for too long, or sitting at the kitchen table working on my laptop for too long!). As a result, the compromised nerve can cause awful leg pain (& weakness?) and incontinence problems (bladder / bowel).
The good news is that it can potentially be treated - can you get a referral to a pain management consultant? I was referred to a brilliant one, who seemed to understand my MRI scans better than the radiologists, and did steroid injections into my spinal canal / caudal region (targeted using fluoroscopic guidance, ie X-rays to show the position of the needle is in the correct place). I’ve had this twice, both times it has been fairly miraculous - ie symptoms reducing / disappearing within a couple of days.
YES!! Maybe, Thank you so much!! I saw a nerve conduction specialists last year and he suggested I need an epidural in my SI joints, but my insurance would not approve it. I may just see if I can find a way to pay for them myself. Then I got cancer and all of this fell to the wayside. That is so amazing that you say this to me as this is exactly what a specialist said it could be. I have to google it right now! thank you so much!! I just don't understand why doctors just don't know more about this. they have had over 100 years to figure this out. I think because perhaps B12 is an easy answer, that they just left it at that and don't try harder. the way I see it, if they could figure this out, many of us, as we age, would not end up in care facilities. But maybe that is where they get their money, all of us needing to go to care homes at the cost of over $9 grand a month. Big money there. They COULD do something about this sooner if they really tried. They COULD educate themselves with this as I am sure doctors have loved ones that suffer from this. You would think they would figure this out!! If we spend as much time as we do trying to figure this out and know more than they do, maybe they aren't trying hard enough. or just don't care to. Or big money is involved. Just my paranoid thoughts LOL. thank you again Dilly_blue!! Love the name Dilly. My mom had a friend named Dilly and she was the sweetest lady. I never forgot her.
dilly_blue, you are great! Yes I had two epidurals one helped me a little but it wasn't in the SI joint and the other made me worse actually. A nerve specialist suggested I have SI injections but my insurance would not approve it. They do these MRI laying down when all the pressure from standing is removed or relieved. If they did this standing up, I think they would see the weight of our bones would squeeze those vertebrae together even more. Laying down spreads them apart. Laying down, I am not too bad, it is when I stand and bend and lean forward that I can't support my upper body and sometimes, my legs start to shake and I either fall or I sit before I fall. when I saw all the bulges and deterioration etc, I thought for sure I had the answer and when I didn't I was so disappointed. I wrote to my doc and asked him to please give me one last referral to the si joint doc and pain management. Thank you for this answer!!
.. just re-read your post, you should check (with your doctor) whether the pain in your left heel is plantar fasciitis… this can also be part of ankylosing spondylitis. If so, good anti-inflammatories can help it settle.
If you can cope with further consultants, it sounds like it might be useful to get a referral to a rheumatologist, as well as a pain management clinic (for possible steroid injections)..
I had plantar fasciitis when I was about 10 - I had X-rays and they couldn’t find anything, then when I was being diagnosed with ankylosing spondylitis in my early 20s, the rheumatologist was asking about my childhood and said that that was what it would have been, and for me, the first sign of ankylosing spondylitis.
I had no treatment at the time, it stopped after a couple of months I think. For the other problems I get (with AS), if they are acute, I tend to rest for a day or two (ie don’t put any weight through the relevant joints / parts), and take Celecoxib (it is a prescription anti-inflammatory that works well in AS, but it can only be taken for, say, a week at a time, maybe a few times a year), which for me tends to resolve things. I also use heat and cold.
There is a (now retired) immunologist in the UK (Prof Alan Ebringer) who developed a diet for AS - the ‘London AS diet’ (it is on the internet) which advocates avoiding starchy foods, as he found that reducing levels of bacteria in the gut (through depriving them of starchy food) really helped (particularly klebsiella, as he identified that an overgrowth of klebsiella triggers AS, due to molecular mimicry). Most mainstream rheumatologists don’t agree with - or don’t know about - his work. Anyway, there was a diet book (by Carol ???) about IBS, which is also good for AS, and Alan Ebringer wrote the foreword.
I don’t follow the diet, as I found it difficult to stick to long term for a vegetarian - but I have found that spending a few days cutting down / out starchy foods and dairy foods sometimes helps, if I am having a bad episode of AS.
Ankylosing spondylitis is an autoimmune condition, and it is not uncommon for people with one autoimmune condition to have others, unfortunately. So, you may find yourself chalking up a number of different diagnoses in short order…
Over the last 20 years, I have found that a pre-existing diagnosis of, say, ankylosing spondylitis, becomes a very convenient ‘peg’ to hang all of the other symptoms on - that may actually be caused by other conditions - so it becomes really difficult to unpick what symptoms actually belong to what..
An interesting article I read titled something like ‘The MMACHC Proteome; The hallmarks of functional cobalamin deficiency’ identified that high MMA / homocysteine levels (from a functional B12 deficiency) have a knock-on effect on the expression of a huge number of other genes, one of the primary ones being a collagen gene, COL6A2, which it up-regulates (increases the action of). Interestingly, COL6A2 binds to Tumour Necrosing Factor- a, (TNF-a) and locks it away in the body’s connective tissues. When you supplement with B12, the expression of COL6A2 reduces a lot (so I assume that there is an uplift in the levels of circulating TNF-a, as much less of it is being bound to the COL6A2..?).
Interestingly, severe Ankylosing Spondylitis is treated with anti-TNF-a drugs… I have wondered whether being B12 deficient (with unregulated COL6A2) actually dampens the activity of Ankylosing Spondylitis. I have certainly found that after injections I am prone to more episodes of AS-type pain, that seem to last as long as the relief from the B12 symptoms does. The AS pain, for me, after injections, is back to how it was 20 years ago..
AS is supposed to ‘die out’ or go ‘into remission’ for a lot of people, in their 50s - I do wonder whether this is because more people become B12 deficient as they age!!
Hope you get some answers, and some resolution for things soon
Gosh Dilly_blue, that sounds like a horrible ordeal to have. I'm really sorry. I don't think I have ankylosing spondylitis but I do think my SI joints are stiff. Or something. It sounds as though you have done your research though. That's what I like about this forum, we all are obsessed with finding answers to help ourselves.
"so it becomes really difficult to unpick what symptoms actually belong to what.."
You are so right!! That's why I lose so many doctors. Because I have so many different things wrong, I have had so many different things happen to me, that I don't know what pain goes with what and what is causing what.
I thought I knew what everything was from, until I found out I had PA. Now I want to blame everything on that. But it sure seems like a lot is because of that.
For instance when I got rear-ended on my motorcycle, I had serious pain that came 4 days later, through my whole body but especially back and legs. Even the muscle that runs from your neck up over your head and controls your eyebrows and also controls your tears. When i cried it hurt my head. Chewing hurt my neck because of whiplash. Still can't touch that spot above my forehead. For three and a half years I could hardly walk without a cane. Why wasn't i bouncing back? I tried every kind of physical therapy. I bought a swimming pool, I did everything I could aside from taking more pain pills, to be able to walk.
My theory is that I didn't have the red blood cells and the oxygen in my red blood cells to heal my severe Whiplash and muscles and tissue damage. And that's why I think my back is so messed up.
Anyway, I sure hope with all that's going on with you that you find relief. Good luck to you Dilly_blue and thanks for sharing your story with us. You never know who it will help.
Thanks - good luck to you too. I do think you should have HLA B27 blood test, and X-ray / MRI of your SI joints - just to rule out ankylosing spondylitis - as SI joint involvement (and osteophytes, and plantar fasciitis) is a hallmark of it.
Good luck with it all - hope things resolve for you soon..
Ok, i will thank you. I did ask my doc to refer me to specialists and if I can have my SI injection I was supposed to have last year. Thanks for all your help. Have a nice day.
Yes, thank you! I did have an injection in my heal for plantar fasciitis, it helped a very small amount. He does want to send me to others for pain management and a specialist. I was just so upset that all of those things wrong with my spine weren't my problem. I thought I had finally found an answer. I guess the answer is that there is no answer. I can't blame my doc for giving up. who wants to deal with a crying patient all the time who you can't really help. He tried though. I will ask him for those referrals. Thank you
Thank you helvella! No information is irrelevant. You never know what might be the link that finds the answer!! I'm a sponge when it comes to information about this. I've done nothing but read everything for 3 months. And yet still know very little. LOL. So, any info is great.
I think my thyroid is okay, but it did come on suddenly with the whole onset of PA, after taking anastrozole. My stomach, hands and my feet hurt so bad! With b12 things are starting to clear up, except for my heel. Although, today it feels about 20% better. I don't know what to do for it. Tried everything from several expensive shoes, daily stretches, injection, ice, walking... Frustrating.
Custom insoles, two different sets of exercises (almost opposite in terms of what they did), rest, walking, painkillers, gels, all made it worse. Wearing the insoles for 20 minutes crippled me for a fortnight!
One of the few things that really did help was getting some ultrasoft diabetic insoles. (I already had ultrawide shoes which could accommodate them.)
YES!! The insoles they advertise at $250 a pop, killed my feet!! I cannot wear any arches!! I am barefoot 90% of the time. The shoes I bought are called barefoot shoes they have no rise in them they're completely flat and very wide to give your feet room to spread out they are the most comfortable shoes I have ever had. Although i wish they were softer. Like being barefoot. And the only ones I can wear right now. I went through over $500 worth of shoes trying to find this pair. And it helped me so much. I thought the stretches were helping but I think they were making it worse. Resting has been what's helped me the most.
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