I find it helpful when someone posts or replies with a symptom not included in the medical field's list that I do experience. Often with the comment I used to have this symptom prior to treatment.
When Trigeminal neuralgia was mentioned a light went on for me and it was helpful to have a name for what I called theeth acke and lightning pain. Same when someone wrote they used to experience spots of blurred vision.
So I used to have this thing where I would experience pain in my side that felt like when you get a stitch in your side when running. The cause is unknown. It was on either side and in the floating rib area.
It was misdiagnosed as Costochondritis which inflammation where the sternum is connected to the rib cage. Guessing misdiagnosed 30 times.
What I believe it was my neurological system malfunctioning and causing severe spasming of the muscles that are connected to the breathing diaphragm. It once was so severe that it caused a large hematoma in my side. A strong pain killer administered once and it would abate.
I also had intermittent temporary loss of level of hearing and vision. I would need speakers at times and then not. With the vision I would need to increase the size of the text on my phone or lap top.
The reason I concluded that this was due to B12 D is they went away with self treatment.
As mentioned else where my ears would sometime feel like I had water in my ear. That still happens as I heal. Same with my lower legs itching.
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WIZARD6787
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Hi wizard 6787, you know I don't know if this has anything to do with your situation. But I have pulled my ribs out of place three times. The first time all I did was reach for a glass on the kitchen counter to get a drink of water and when I reach for that glass I got such a sharp pain in my right side and I couldn't take a breath. Turned out that I had pulled one of my ribs out of place. This was before I knew I had pernicious anemia probably about 15 years ago. They gave me medication which caused me to have an allergic reaction and I ended up with a rash all over my body for about 8 months and kidney failure. Nobody knew why this was happening to me and many many many doctors visits later it was never resolved. But that rib is constantly wanting to come out of place just sitting here watching TV turning to the side to talk to somebody, silly reasons and it takes my breath away every time. But now I stretch my arm out and I do stretches and it seems to help. But I've also just from bending down and picking up a pencil off the ground from a chair the arm of the chair push my rib out of place. And for months it was very painful. That's happened twice now. So I don't know what's going on but I have rib pain and rib problems. I have no idea if it's anything related to what you're talking about or if it's related to my B12 PA. Or anything no doctors do. But I have some of the most strange reactions to medications and just to things in general. And my doctors Don't know what to think. So I hardly tell them anymore.
I feel I have subacute combined a generation, but the treatment for that is B12 injections So I can't do anymore for myself that I'm already doing. Why it's not working like I wished it would I have no idea. But I am much better than I was 11 months ago but I could use being a whole lot better than I am right now. Maybe this is as good as I'm going to get. Just keep up with your B12 and keep a diary of your pain. It really helps.
I play video games and was getting very sick and very dizzy and getting severe vertigo from it. But that has gotten so much better. I still can't play certain video games like Mario kart, but I can play a lot of games. Like elder scrolls.
Blurry vision is a problem with me, and I've had my eyes tested and they're 2030 which is very good. So they can't explain my blurriness. My teeth break constantly my gums hurt and bleed and they can't find any reason for it. I have strange reactions to medications.
I take two acetaminophen or Tylenol same thing, and I take either a half a tramadol or no tramadol and that helps me be able to do some things for a few hours during the day and then around 1:00 or 2:00 I start to crash.
Just telling you a little bit about my stuff see if anything is similar to yours. I find that when people talk about themselves and tell everybody what their symptoms are, it really helps me a lot. Knowing others have this is so comforting in a strange way.
I find the neuropathy in my feet is really really debilitating. But I put ice on my feet I wrap an ice pack around them or I just rest my feet on them and I have to say I think ice really helps my neuropathy a lot. It's hard to want to put your feet on ice when it's negative 33° outside but it is so helpful and then sometimes I wrap a heating pad around them afterwards and going back and forth like that seems to get me out of a flare up. It really helps with the severe pain. It still hurts, but I think ice really helps my feet.
I wish you continued success with your self-treatment and what you're doing for yourself. We have to do it to help ourselves because we can't depend on doctors. And our friends and family for the most part just don't understand. It's a very lonely condition to have. I wish I knew other people here in the United States so I could start a group. I'm going to do some more looking into that. We don't have much in the US for people like us. You guys (UK) are ahead of the game with it, even though you're still behind the game you're much further along than the US.
P. S. I too have fluid sounds in my ears and just had an ER visit because my face swelled instantly after a sip of coffee. Turned out to be clogged Eustachian tubes. I was told to eat sour stuff chew gum and yawn a lot and hold my nose and blow. To open my ears. I never expected teeth and eyes and ears and ribs, to be a part of B12 PA. But I believe they are.
I used to do the warm and then cold for my feet. Now that is all but gone due to the amount and frequency I inject SC. I am from the USA and was in Scotland for 5 months and 20 more days to go. You situation sounds somewhat similar to me until I started to self inject more. Current regiment is:
.50 mg SC Hydroxocabalamin and 5 mg SL methylcobalamin/adenasolcobalamin three times a day and a B-complex. I also take Pyridoxal-5-Phosphate .25 mg liquid in water twice a day. I also take 2 g of Betine twice a day. Just started that for a trial.
Thank you for this information. I'm going to Google it and look into those things. I sure hope my feet get better. You give me hope. Thank you so much. Have a wonderful day.
Tooth abscesses, liquid in ears from clogged eustachions, ocular migraine, dizziness, sometimes very acute, B12 deficiency gait. Plus most of the others.
This symptom is listed; difficulty swallowing. Thing is I often could not swallow as I would aspirate, especially if I got up in the night. It was bring me to my knees pain. Could not eat solid food for 6 +- months. Lost 100-80 pounds. Did experience loss of appetite that was not the cause.
EOD B12 injections have helped me tremendously, but I still have an issue with getting easily startled. I am VERY sensitive to sight and sound to the point that I close my eyes, and/or stand still until movement around me stops and/or scream.
Did not expect this when I first posted. I am recalling symptoms that I was used to having that have now gone away with treatment. I used to have this thing where with a blanket on I could not tell where my feet were. I can now. I used to get my left and right hand mixed up all the time. Think I was reaching with my left and it was my right.
I do not get cramps in my legs anymore. They used to be horrible. Actually my toes also. Actually my feet and legs in general.
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