Hi everyone I am reaching out in desperation. I live in Vwgas and I have been sick since 2015. Symptoms started with painful, swollen feet and hands, extreme lethargy (to the point I can barely stand), and numbness and tingling in face , hands and feet. My then primary dr diagnosed me with PA and advised me to do monthly injections. It did not help. Insurance changed so I followed up with new Dr who said my b12 levels were fine and I don’t need it.
Fast forward to 2021 when my symptoms fit so severe that o ended up in ER. My legs were jello, numb from head to toe, so weak. After MRIs of my brain and spine, and even a lumbar puncture, doctors found I have seven lesions in my brain, however they stated they did not look like typical MS lesions but decided to monitor me going forward with the possibility of MS.
I have been under a neurologist care, and in and out of the hospital four times within one year. Each time I am hospitalized I have new symptoms and my existing symptoms are getting more severe. At one point I decided to take matters into my own hands and started doing B12 injections again. I did them every day for a week and that was the only thing that improved my wobbly legs and other symptoms. But they continued off and on. One neurologist had me going every four weeks for a steroid infusion one hour per day, for one day. His thought was to stay ahead of the flares and try and trade them but it did not work. He said he was not dismissing the MS diagnosis.
I went to another neurologist for a second opinion. She does not think that I have MS, and she thinks that all of my symptoms are due to my PA not being properly treated. She is sending me to Cleveland clinic to have the MS specialist rule out or verify the MS diagnosis. But she thinks I just have severe degeneration because of the PA. My vision is now affected and it’s getting scary. I have to go to physical therapy three times a week because my gate has been affected and my balance is unstable.
Does any of this ring a bell with anyone? I am so frustrated that this has taken over my life.
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Skingal74
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We have had members tell us that they were mistakenly diagnosed with MS when they had Pernicious Anaemia. After diagnosis with PA here in U.K. ,6 loading doses of B12 Hydroxocobalamin, over 2 weeks are given . If you have neurological symptoms , then injections should be given every other day , until no improvement is achieved . It can take years to improve if PA has been neglected . So don’t give up hope . .
You self injected for a week and perceived improvement . So i would start doing that again . .You cannot overdose on B12 .
Do take a modest daily 400 mcg tablet of folic acid also — it works with B12 . Very best wishes .
Do be patient though . Healing can take some time , especially if you have been deficient for a long time. Don’t be discouraged if symptoms get worse before they get better . This often happens. It’s the nerves waking up !
Sorry I did not realize. You may want to look into optimal dosing with methyl b12 because i vaguely remember reading that you need higher concentrations to get the same effect as 1000 mcg hydroxy or cyano, and that it might need injecting daily, but do look it up to be sure.
Note that plenty of people (like me) have MTHFR mutations but do just fine on standard forms of b12 & folic acid.
Hi skingal I’m so sorry to hear about all your troubles. Well this post resonated with me as I was also tested for MS with 3 lesions on mri and finally the neurologist after the spinal tap said it is not ms and thinks it may have something to do with pa ( but he had no clue) I have taken matters Into my own hands only from the knowledge I learned here, I bought my own cyanocobalin and I inject about twice a week… the improvement was amazing although it did take about two months for neuro symptoms gait tingling in hands, fatigue to improve. Now it’s all manageable I inject more frequently if symptoms seep through. In hot weather I need to inject more frequently for some reason but I have learned to listen to my body and give it what it needs.
I really sincerely hope you start to feel better I have heard from so many people on this forum that the magic juice is the b12 and symptoms get considerably better also with folic acid supplement or I do a multivitamin to cover all bases.
Thank you so much!! The b12 injections are key! I wish I would have stuck with it and not let my hematologist sway me but now I know toListen to my body!! I take lots of healthy, supportive supplements, including methylfolate . I have an MTHFR variant so I need methylated forms of some supplements. I also eat clean and make sure to exercise, but also not over do it or push myself when I know I need rest!
You guys have given me hope! Thank you for your support! I am feeling less discouraged ♥️♥️♥️.
Oh my. I feel so bad for you!! It’s insane how debilitating this disease is! I have days where my internal tremors are so bad that I can’t sleep and they make me nauseous. Also days where the tinnitus is nonstop all day. I have yet to fall from my wobbly legs and I pray that doesn’t happen. I’m so sorry you had to deal with all of that. Praying your health continues to improve. Thank you for sharing your story and advice. ♥️
I also have the lesions, strange gate, numbness stinging and burning of lower limbs, hands and fingers dont seem to want to work. The dizziness and sight disturbance is very frightening.
I have a neighbour who was labeled with MS who was in a wheelchair who can now walk because it turned out she had PA !!!!
If only the hospital had thought to give you a B12 infusions but that would have been far too logical seeing that you have PA ! 🤔 Logic doesn't seem to come into it.
Keep those injections going in, on the odd occasion I have had to inject twice a day. Once out of desperation and fright I used B12 patches as well.
Do what makes you feel better and able to function. 😘
Thank you so much for sharing! I feel like each flare/episode sets me back even further, and something new arises. I’m so frustrated and I hate that doctors here are not knowledgeable about PA. Honestly, forums like this and my own research are the only things that have helped so THANK YOU!! 🙌🏽💗
i ended up in the ER with severe weakness and fatigue. i was diagnosed with a B12 deficiency (despite eating plenty of meat) and based on further testing including a colonscopy/endoscopy and a myriad of other blood tests, i did not have PA (my blood results were normal aside from the b12 being around 112). i wanted to rule out MS so I had the MRI done and that was negative as well. After starting with weekly injections for b12, i moved to injections every two months. my symptoms came back with a vengeance and this time took even longer to go away. since that happened, i started with weekly injections and after several months, feel better than ever. my point is, dont give up on the injections and increase your frequency. maybe daily or every two days might be a better option for you given the severity of your symptoms. but it does take time and as others on here have said, sometimes it feels like they arent working but you cant lose hope.
Thank you so much for sharing! I’m so sorry for all you’ve endured but so glad that things are looking up.
I’ve been doing daily methyl injections for five days now. Symptoms have subsided slightly but my legs are still wobbly and the tremors have not subsided. Today, I am experiencing pressure behind my right eye again. This afternoon I gave myself a second injection. I’m praying this will help 🙏🏼 I appreciate all of the advice and insight!! 🤗♥️♥️
The Wahls protocol is a good book to read. It is written by a scientist who has MS so bad she was on chemo and in a wheelchair but nothing helped her get better until she changed her diet and took necessary vitamins and minerals. She is a scientist who was a non believer in the holistic approach to life but now she swears by it.
Separately I can say that your symptoms are similar to what I had back in 2018 and I was so ill it frightened me.
I was told I had PA even though it came back negative. I was given 3 monthly injections and never referred to a neurologist until now. I'm soon to have my MRI.
The only thing that helped my symptoms was changing my diet and self injections every other day for quite some time. Now I inject twice a week or if I feel a flare up coming.
Changing my diet was a game changer. I stripped all processed foods, all dairy, all sugar and gluten. Basically I eat what mother nature intended us to eat.
I wish you well and know you have the power in your hands to make yourself better. I very rarely rely on the health system now as they are too keen to dish out tablets rather than get to the root of the problem and because a lot of them are small minded souls they don't want to imagine that most body sickness and disease is caused due to lack of vital vitamins and minerals.
Hi there!! Thank you so much for sharing your experience! I appreciate it and will take all I can get!
I changed my diet a few years ago and I notice it is a HUGE factor. I avoid dairy and gluten, along with soy. I’m not a huge fast food person, but I will indulge occasionally. I follow Dr. Wahls on Instagram and have her book. She is definitely an inspiration! 💗
I had been doing weekly injections for a while but I had no clue that I was severely deficient. Since I’ve started daily injections this past week, I’ve noticed some relief. I will keep up with it for a second week then go back to weekly injections.
This is going to be a long journey for me, but I’m up for it! I put from all of you here has helped immensely and has me less discouraged. Thank you so much!! Wishing you continued well being! 🤗
Wonderful to hear that you are taking steps to treat yourself. I wish you all the best and hope you can find comfort in your routine.
There is just one thing I can think of, getting pain relief. I have PA and peripheral neuropathy which causes a burning pain in my feet and numbness. I have tinnitus as well. I found a couple of 30mg codeine helped with the pain in the evening reducing twitching. Then I was pointed at gabapentin.. I find 3 x 100mb capsules taken though the day knocks the pains on the head. Life is tolerable. It might be worth asking if that might help you.
Morning Skingal. I have to say that before I even spoke to my GP, I said to my husband that I either have a brain tumour or MS. I think my husband thought I was being a bit extreme. But my balance was terrible and I felt the ground move under me, my memory and thought process was everywhere. All I can say is that after loading doses, and supplementing but B12 in addition to my 12 week jabs, things got much better. I am now managing fine on B12 jabs eight weekly and folic acid supplements. My memory recall can still be slow at times and some tingling to feet and hands but compared to when first diagnosed, I am doing really ok. I wish you all the best x
Thank you so much! I am heeding advice from everyone here and am doing loading dose injections. I feel slight improvement but I know it takes time. Also, one day I feel ok, the next I don’t. Today I’m back to feeling like I’m swaying and I’m sooo tired! But I will keep up with it and be patient. I am glad you are feeling better and am sending you good wishes for it to stay that way!
If B12 deficiency is not treated adequately, it can lead to demyelination of the nerves, including SACD, sub acute combined degeneration of the spinal cord.
Aside from my 7 lesions on my brain, nothing else has been noted. In my lumbar puncture, the neurologist indicated my spinal fluid was slightly abnormal but wasn’t helpful in explaining why, other than no oligoclonal bands typically found in MS.
I have one audio book which is the “Could it be b12” and it is sooo helpful. I will research all the links you sent. I am so grateful. Thank you so much!!
I'm not medically trained or a scientist, just someone who suffered for years from unrecognised B12 deficiency.
I'm guessing that the pattern of brain lesions from B12 deficiency might be different to pattern of brain lesions from MS.
I searched online using terms "white matter lesions b12 deficiency" and found several research articles that were interesting to read.
Also found some interesting research articles when I searched for "subacute combined degeneration of the spinal cord" (SACD)
My understanding is that SACD needs to be treated aggressively with plenty of B12. I have read case histories of people with SACD experiencing healing but have also read that there is a risk of permanent damage.
Search online for "SACD B12 deficiency healing".
Found this slide show online from a presentation Sally Pacholok gave.
Hello, skingal! I hope B12 works out for you! I can't speak for others, but I had a single nonspecific white matter lesion when I took a MRI head scan before diagnosis, and apparently it's not rare for PA. I'm lucky I got an early diagnosis because I had an upset stomach and underwent an endoscopy, and the second histological test returned autoimmune atrophic gastritis associated with B12 deficiency. I had to take it to a second lab to get it right, it's absolutely underdiagnosed, but thankfully my doctor knew what to look for. My symptoms were not as severe as yours, but my anxiety, balance issues, and tingling all went away with treatment. Even in the more severe cases there is usually a dramatic recovery in terms of symptoms. I do hope that's the right diagnosis, it definitely checks all the right boxes! But even in the chance it turns out not to be, B12 is quite good for the nervous system in general, so it's definitely worth a try.
Please try and search for a good functional medicine doctor in your area. Also B12 sometimes may not get absorbed into the body if you have leaky gut. I went back and forth from doctor to doctor when my leg and ankle got weak and injured. Until 7 years later when I was finally diagnosed with MS. But don't solely rely on doctors. I found that testing for intolerance and allergies and changing my diet to paleo (check MShope.com) allowed me to stop the issues I was having. Good luck 👍
That is exactly the same story as my own. I was diagnosed with PA due to pins and needles in feet,( back in 1990 something.) . I was Prescribed injections,. After a series of falls , which resulted in broken bones, i was looked at again and given a diagnosis of MS, via lumber puncture. The worst thing i did was, when the doctor asked about family history I mentioned a cousin who had MS, they didnt seem to look any further. I am still not convinced I have MS,
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