Hello all. I now know "I" have pernicious anemia. But at this time I'm not writing about me. It's my wife I'm very, very worried about. She has been having the same symptoms that I've had, so she finally also had the IF test. However, for some reason, the results from the test only showed parietal cell antibodies as negative but did not show the IF-blocking antibodies results. I have been saying that she needs to be retested again and this time be certain that they also get the results for the blocking antibodies to rule out pernicious anemia. Am I correct that if you have a negative result for the parietal cell antibodies but they do not test for the blocking antibodies you could still have pernicious anemia? One thing I'm worried about is that my wife is talking about having her left leg amputated because of the extreme sciatic-like pain she is having from her hip area to her heel. She says the pain is usually anywhere from a 7-10 out of 10 on the pain scale. Most days she is crying from the pain. At first, I thought she was saying that because it was her way of expressing just how severe it felt, but now I am starting to seriously worry. She is saying in the next few weeks if the morons (I mean doctors) don't find a way to rid or ease her pain, she is going to call for a consult to have her leg amputated. I know this sounds like a dramatic effect, but I know my wife and she is very serious. We are going to ask our newest GP if she can have an MRI, CT, and an x-ray of her hip-leg area. After those 3 tests if they learn nothing about what causes her to have this horrible sciatic-like pain, then she is saying she might as well have the leg removed. I know this sounds crazy, but I am perplexed about what else to do or advise. I hope we can get another IF test to hopefully rule out PA, but if that does indeed provide a negative result for the blocking antibodies then we're back to waiting on the CT, MRI, and X-Ray test results. After that, I'm concerned with no other answers. Can anyone offer any advice? Thank you sooooo much.
MrJustatip: Advice to help save my wi... - Pernicious Anaemi...
MrJustatip: Advice to help save my wife's leg.
Sorry to hear of your wifes troubles. If its Sciatica there are many possible causes :
my.clevelandclinic.org/heal...
Hopefully the test results will start to point towards the cause of the issue.
Thanks for the comments, etc. Yes, hopefully, the tests will provide some answers. She has already had vitamin B12 deficiency, apparently without PA diag. So, yes, she had the B12 deficiency symptoms of sciatic-like pain, because I also had what she is now suffering from, but mine has mostly subsided. The question is she was getting B12 shots since January off and on for about 3 times per week then lately for about a month every other day, yet the sciatic-like pain has not gone away even after the B12 shots. That's the mystery. I know it often takes a year for the B12 deficiency symptoms to go away completely after you're healed. Maybe that's what she will have to wait for. I know when that same kind of pain was really bad in me, I can relate to it possibly driving a person mad. I just pray I can help her before she takes something to an extreme solution. Thanks again for your help.
I can only share anecdotally. An acquaintance had crippling sciatic pain which immobilised her for several weeks/months. She was treated with morphine to make life bearable which helped with the pain but is a heavy drug to take. The sciatica did get better and she has also recovered from the morphine regime and is back to more or less normal. It is possible that your wife's pain management could be better.
I appreciate your comments, thanks so much.
Have spoken to my acquaintance in light of our conversation. It was rest that helped the most. She had limited physiotherapy. The morphine made it bearable when it was very bad in the beginning. She is gardening again, carefully and supervised by her husband, but movement like that took about 9 months of resting. Hope that helps.
Not sure what the blocking antibodies are.The only tests I'm aware of is parietal antibody blood test not recommended to be used to diagnose PA
Intrinsic factor antibody test if positive gives 5o% of those with PA a diagnosis.
Perhsos that's how you were diagnosed .
Pain is awful.
Especially if no pain relief works.
Has her b12 level been tested?
Vitamin D
Fbc.
Yes scans may give some answers.
Pysios can help whilst waiting.
Get better pain relief too
I worked with s woman who had an implant that had a control for pain relief.
Bit like a Tens machine.
Back pain.
Hope a solution is found soon.
Yes, she has vit B12 def, so that's part of the problem. She's had shots since January, but the shots still have not alleviated the pain. Thanks for your comments.
I think the b12 and the sciatica are two separate issue although if your wife is low on b12 it won’t help with mental and physical strength. Sciatica can cause a grown adult to cry, it’s a horrible pain. And I can see how your wife has been dragged down to desperation and talking about having her leg amputated. It’s so so easy to ease though but it does mean pushing through the pain to get to the other side. There are many exercises stretches etc that can help to release the sciatic nerve if the cause isn’t from compression in the spine (which still doesn’t need an amputation it needs a decompression) visiting a oesteopath whilst waiting for the dr to help could be useful. But yes pain from sciatica is a horrific pain and acute pain causes trauma. But plenty you can do from home to help. Good luck.
Thank you so much.
Pain seems to come from a certain place, but it is all, ultimately, experienced in the brain. And almost any pain can be a ‘referred’ pain; that is, where it seems to come from isn’t where it actually comes from. Amputees often report ‘phantom pain’, in the missing limb. I occasionally get toothache, twinges at least, from where there is no longer a real tooth.
There’s a real danger here that if your wife goes ahead with the amputation, she will still get the severe pain in the missing limb, as well as having disabled herself for life.
The pain in the sciatic nerve may well respond to some spinal manipulation, so see if you can find her a better class of ‘moron’ to treat this terrible issue,
Thank you so much for your comments
It sounds more like a spinal issue to me - I have endured a Spondylolithesis Grade 2 for 57 years. I have also had surgery for Spinal Stenosis. All in the lumbar region. I am now in the process of considering Fusion surgery.... How is her mobility ? I have exercises to do and still manage floor yoga.
I have an excellent massage therapist who specialises in Myofascial Release...
Hope you find answers soon...
Thanks for your comments.
Sciatic pain is very difficult to cope with but amputation isn’t the answer.
Has your wife tried visiting a physiotherapist or chiropractor?
Has she had X-rays or an MRI to see what might be causing the pain?
Gentle stretching exercises really do help, a good Pilates tutor would be able to help and is really worth trying.
Sciatic pain is something I’ve suffered with for years, physio, chiropractic treatment, gentle Pilates exercises have all helped give me much relief from the pain.
I would really recommend that your wife asks for a physio referral through her surgery. If not or if the waiting list is too long I would see a physio privately.
Thank you so much, I greatly appreciate your comments and suggestions. We do have MRI, CT and X-rays coming up.
I'm sure that much of the pain in my back, hips and legs was due to being b12 deficient for many years. It affects the way you stand and walk, not to mention the nerve damage which is why gentle stretching exercise can help as it strengthens muscles, tendons and ligaments. Following a very bad fall some months ago the physio I was seeing told me that he's known nerves to mend 6 years after an injury which gave me some hope as my GP had said up to 2 years max.
I frequently inject b12 but I do have osteoporosis and osteoarthritis in my back, pelvis and hips. It's difficult to know what causes the pain at times but I've read that pernicious anaemia can cause osteoporosis so delay in diagnosis is likely responsible for both nerve and bone damage and also the cause of my loss of balance.
I hope you get some answers from the various scans and some relief from the pain that understandably is causing your dear wife to feel so desperate.
It might be worth pointing out to your wife that amputation does not necessarily get rid of pain. That amputees often suffer what I think is called ghost pain.
Thanks for your comments
perhaps concentrating on b12 d and sciatica May be going in the wrong direction. Perhaps your wife actually needs her hip replaced. The pain I had before having a new hip was connected to spine, sciatic nerve, all the way to my toes and rating a nine, causing tears. Hope you find a solution from a mri or ct scan.
Thanks so much for your comments
I had very bad left hip/lower back pain at first- which meant I could not stand up straight. The pressure, when I tried, made my legs shake. That, daily diarrhoea and fatigue were enough to send me to the GP. It took a while to get there, but B12 deficiency was discovered. I had by then had various scans, physio - nothing found and nothing helped. The physiotherapist, with nothing else to go on from scans, treated it as if it was bursitis. Certainly some deep groin swelling- and plenty of clicking.
Eventually, that and other symptoms that I hadn't realised were B12 deficiency-related, improved. It took a long time and frequent B12 injections. Eventually I self injected, but initially, when functional B12 deficiency was diagnosed, six months of 2 injections a week from the surgery helped start the improvements. Functional B12 deficiency is found by testing MMA (methylmalonic acid) and I was lucky to have a GP who knew that and repeatedly requested the test from various hospital labs.
For me, the parietal cell test proved negative, as did several (3 ?) IFab (intrinsic factor antibody) tests. I think this is the test you wish your wife to have done. Please bear in mind that a negative result does not rule out pernicious anaemia (PA) as the cause of her B12 deficiency, as the test will only pick up 50% of those who do have PA. Martyn Hooper, the founder of the Pernicious Anaemia Society, had to have three IFab tests before getting a positive result.
There are other causes for B12deficiency of course that can be checked for.
Folate, ferritin, vitamin D are the most common other problems - difficult to raise from low results, and to maintain any rises but keep trying. These should be monitored regularly to know how best to supplement. Thyroid can also be an issue.
I now have prescribed vitamin D and Raloxifene as osteoporosis of the spine was found by Dexascan.
Showgem is right - an MRI of the spine might be useful in that B12 deficiency can cause neurological problems from damage to nerve protection (myelin sheath). Perhaps a GP's referral to a neurologist next ?
I appreciate your comments so much
No problem.
It did take a while, and not always easy to see progress as it occurs sometimes very slowly. It really did help me to keep a daily symptoms chart - although no obvious upward trajectory and no visible pattern in comparison to injection date. Some of us take time, and need more than the usual frequency.
It certainly helps when your GP, nurses, friends and family notice with delight that you are looking better, even when not feeling it yet.
Hoping that you can persuade your wife to get the help she deserves - pain can make you so desperate. Best wishes to you both.
what is her b12 level before any injections? that's all i went off of. I had sciatica so bad I couldn't walk, but after 6 months of b12 injections it started to resolve. b12 deficiency takes a long time to occur, meaning it takes 4 years for the stores in the liver to deplete; therefore it takes a lot of time for the healing to take place. However, I was bed ridden now I'm climbing mountains literally and no pain or sciatica. She has to give it a chance or she may regret the decision.
my mri's and scans were also negative for any back problems. I did all sorts of physical therapy that did nothing. but the scans are useful to rule out other causes. if they don't find anything, I would keep going the b12 route. anyway, b12 can't hurt as long as she doesn't have any pre existing liver or kidney functions issues. if her liver and kidneys are healthy b12 is harmless in any dose so it's worth a try. keep her on the EOD if not move to daily injections.
also b multivitamin
Thank you so much for your comments,
Has your wife had her Vit D levels checked? I was found to have no measurable vit D and the pain was excruciating in my back and thigh. I also had a hip replacement so any of these could be a point to consider. I hope a solution is found soon.
I'm sorry to hear about you and your wife's troubles. I don't know if this will reassure you, but it is VERY difficult to get your leg amputated through choice. I smashed both legs up in an accident 15 years ago, and have been in a wheelchair ever since, as both legs are useless and painful. I tried to convince the doctors to amputate my worst leg, at the knee, in order to reduce my pain and improve my mobility, but they wouldn't even consider it. It seems unlikely that they would agree to amputate your wife's leg, if it is otherwise healthy, but also because if it IS sciatica related, then removing the leg is unlikely to help, because the problem is with the sciatic nerve, not the leg itself.
I would suggest a chiopractor (sometimes one adjustment can fix these problems), massage therapist and also a physiotherapist. All are a lot less extreme than amputating a leg and may get rid of the pain.
Scientist, not medic.
About the IFAbs... It gets technical, but there are believed to be two types; blocking, and binding. Or alteratively, the IFAb molecule blocks binding of the site in the ileum, or blocks binging of the B12 molecule, but either sort stops B12 being transferred from food to the receptors in the terminal ileum. As far as I'm concerned, as a mere lab rat, it makes no difference. If the blood levels are low, then raise them with injections, or oral, or both, but monitor what's going on. Amputation sounds a bit final! there mgiht be something else that can be helped. Good luck to her.
I agree with Carlosdoug that back problems are often due to arthritic hips. The sciatic nerve passes from the spine through the pelvis and a misaligned hip joint can cause severe pain and irritation.
I had dreadful sciatica caused by a spinal curve due to lopsided hips. After a hip replacement the back/leg pain disappeared. I was amazed that the two things were connected.
I'm sorry I haven't read all the replies but go directly to the ER/A&E . I had awful sciatica pain years after starting B12 injections, and it was a slipped disc / herniated vertebra in my spine.
I was in intense agony for 10 days along one leg and couldn't stand on my tip-toe (can she do that, stand tip-toe on the bad leg? That's the diagnostic test they used before putting me in the CT scanner).
I went to the emergency room and they wouldn't let me leave because the disc was herniated so bad (seen on the CT). Directly into surgery the next day. It's been over 2 years and I still have some residual numbness.
I have just read your post. I was diagnosed with PA with gastric parietal cell antibodies earlier this year but also decided to have a number of symptoms checked to see if there was an alternative reason for them other than PA or other treatments as well as B12 injections if they were associated with PA.
I had what sounds to be a very similar sciatic-like pain down the outside of my leg that started about three years ago, before my PA diagnosis. I assumed I had a problem with my hip joint. I made an appointment with a hip surgeon but was directed to a spinal surgeon before my first appointment with the hip specialist after speaking to the secretary.
That pain was completely overwhelming and constant, and my mobility massively reduced. I could trace the pain across my lower back, down the outside of my leg and into my foot. After several months of this pain I saw a spinal surgeon, had scans and tests and they identified a previous back injury had worsened. Decompression surgery on my spine changed my life and I could not believe the pain had disappeared after such a long time in agony. Good luck for you and your wife identifying a solution to her difficulties.
Long term B12 injections should they be stopped
An update.. Kinda scared.
Can anyone tell me how to manage pernicious anemia as my eyes are failing and my GP will not help.
Assistance required with interpreting B12 and Pernicious Anaemia Blood Tests.....
