Coolness in feet, legs and one side of neck - Could it be nerve healing?

[Cobalt1312]

Hi and thanks for reading my post!

I'm approaching 1 year of B12 injections and in the last week or two I've been having some occasional coolness in my feet, and sometimes in my lower legs up to my knee. The coolness in my feet sometimes starts as an almost burning pain in my right outer toes. It reminds me of when my feet would get way too cold outside growing up where we had really intense winters. Sometimes in the past month or two I also seem to get the coolness in my left upper chest just around my collarbone and the left side of my neck/sometimes face.

Before being diagnosed with pernicious anemia I started to have trouble bringing words to mind, tinnitus, dizziness, fatigue, nausea, unintentional weight loss, more and more food sensitivities, fairly intense sensory sensitivity which would often end in crying episodes, decreased ability to handle stress, an increasingly short temper, and random sensations of bugs crawling on my feet and toes (for some reason especially when washing my hands or lying down in bed).

Initially after starting B12 injections I gained a lot of weight back and went from feeling like I was struggling with gastroparesis to having a ravenous appetite, not like my previous feeling full after 3 bites of a meal. I would feel light tingling in the left side of my abdomen and I associated it with nerve healing. This was probably my biggest and most noticeable area of healing. Many of my other symptoms seem to be making slow progress, and I almost never have tinnitus anymore.

More recently, in the last 2-3 months, I switched to hydroxocobalamin from cyanocobalamin. Have any of you experienced a sort of coolness in different body parts in the progression of your B12 healing? How long can people keep healing and making progress after starting treatment?

I also recently, in the last month or so, started taking a super low dose of Pepcid 1x daily and the lowest dose of liquid Cromolyn Sodium before meals to help with my intense food sensitivities. I have quite bad histamine intolerance and my doctors think I have mast cell activation syndrome.

Reading online information, it seems like the general consensus is that H2 blockers can be linked to B12 deficiency when taken at high doses for long periods of time, but I inject B12 and take a super low dose so it doesn't seem to me like it should be an issue. Does that sound right?

Does anyone else take Cromolyn or know if it can interfere with B12 injections? It's a mast cell stabilizer, and in my researching I found some people think it works to keep mast cells from degranulating by blocking calcium from being absorbed inside the cells.

Thanks for sticking with me this long and thanks in advance for your insights, Happy Thanksgiving!🦃🍁 I'm thankful for all of you and this forum!

[Wwwdot]

Hi Cobalt1312 you are about a year ahead of me in your PA journey and it is heartening to read. I mirror all your symptoms except for tinnitus and weight loss. I had no tinnitus and I had unexplained weight gain.

Since starting Vit D orally and B12 injections I have lost 7lb in three weeks and I now have tinnitus. I can’t offer any answers to your questions but I will read any comments with interest. A very encouraging post. Thank you.

[Cobalt1312 in reply to Wwwdot]

Wwwdot, welcome and thanks for your reply! It's nice hearing about your experience, because though we have similarities we're not all exactly the same. I'm hopeful/excited for your treatment! I'm so glad my post is an encouragement for you 😊 I wish you all the best and continued healing- Take good care!

[Technoid]

I would be wary of using Stomach Acid Reducers like Pepcid unless some thorough gastro tests have given a reliable conclusion that you you have too much stomach acid rather than too little. Heartburn can be a sign of too low stomach acid rather than too high. Since you are getting B12 injections its not going to affect your B12 level, except in so far as it could make it more difficult to absorb B12 from food . Stomach acid is needed to separate B12 from the protein its attached to in animal foods.

But significantly reduced stomach acid longer term can also lead to SIBO and susceptibility to H.Pylori as the normal acidity provides a protective environment. It can also lead to undigested nutrients which could leave you low on important nutrients like Folate, Iron, Calcium , Magnesium etc, those would be my concerns, if stomach acid was reduced too low especially with longer term use.

[Cobalt1312 in reply to Technoid]

Technoid, thanks so much for your reply! I definitely agree that acid reducers should be taken with great caution, especially in regards to pernicious anemia. I'm working closely with several doctors and a nutritionist. We are keeping a very close watch on my digestion and nutrient absorption!

I had an endoscopy last March and no gastritis was found in my exam, with a camera scope nor with a microscope of my tissue sample. Interestingly though I had a couple very tiny erosions in the antrum of my stomach (paper-cut size) and some old heme. It's not typical for people with atrophic gastritis to have damage in the antrum, it's usually the corpus and fundus that show signs of distress. I pressed my gatroenterologist as to why I might have the erosions in the antrum of my stomach and all she could come up with is NSAIDs, or chemical type burns from strong drugs or spicy foods - which I consume/d none of.

Earlier on when I couldn't stop losing weight and was super nauseous all the time, I was working with a different nutritionist than my current one. She suspected low stomach acid and I tried betaine HCL - this resulted in strong burning in my throat and so much pain in my gut that it made it hard for me to eat. We decided it was too strong of an approach and I switched to apple cider vinegar gummies. This would still irritate me and cause pain if I used it too often, but most troubling was that I got to the point that when taking it my throat would swell so much that I had trouble swallowing and was very fearful that I would choke to the point of not being able to breathe. When I stopped I gradually got better until that symptom completely resolved. Come to find out almost a year and half later, vinegar is very common and strong mast cell trigger.