What are your symptoms after 4 months... - Pernicious Anaemi...

Pernicious Anaemia Society
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What are your symptoms after 4 months of treatments?

blue2323
blue2323

Hi all. One of the best things about this board is that it really helps you feel like you're not alone. If you are somewhere around four months along until your treatment, could you post what your symptoms are please? Also are they new symptoms or old symptoms? Are some of your symptoms better and are some of your symptoms worse? Do you feel like your recovery is not linear? I would love to hear from you all. Thanks.

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Here's my current list along with a little background info:

gastric sleeve surgery 2013

mthfr mutation both alleles

blood work shows b12 in low 200s back through 2015 and earlier,

don't know how much of that was active.

currently taking 5k mcg methyl b12, 2k mcg methylfolate per day. supplementing since August 15.

current symptoms :

entire lymphatic system feels inflamed, especially right side, but left too. not sure if it's nerves, lymph nodes, or both. panic when swollen areas pushed

swelling and pain in neck and back

sometimes feels like lumps in my neck, front/sides and back, under my chin, panic flares when I push them IF it's flaring. comes and goes... no symptoms if not flaring/inflamed

anxiety/panic esp when back of skull soft spot is pressed (it's very inflamed)

muscle twitching arms and legs comes and goes (improved after adding plain greek yogurt to my diet)

sore calves comes and goes

pain and swelling in nerves or lymphs under right arm, comes and goes, panic when pressed

swelling of peripheral nerves, esp. legs, comes and goes

pain in right thigh, panic feeling spreads across brain when pressed

panic and/or zing in brain when swelling peripheral nerves are pressed

severe tmj pain and stiffness, comes and goes

weakness in arms and legs, usually right side but sometimes left if I use it more, icing neck helps

fatigue

burning sensation in spine, lower half and sometimes neck, middle spine burning and hurting is a new symptom since around December 1. weak legs sometimes.

tremors, mostly in my head, mostly at night, shaky brain feeling, tmj connection? stretching out my jaw helps, icing neck helps... yogurt has helped this some

optic nerve weirdness, fireworks in vision one morning briefly, vision sometimes weird, but not like it was at first with b12 deficiency. more migraine like.

cramping in foot

heart palpitations... much better than it was though. heart racing sometimes, esp morning

jumping nerves/muscles in neck, comes and goes

feeling of lump in neck sometimes, varying locations but esp. under jaw. panic when I push on swollen place. comes and goes.

very dry eyes, comes and goes,

extremely blood shot every morning,

depression. also comes and goes

high anxiety, comes and goes

inflammation in neck and back gets much worse with use of arms and hands, whichever side I use, that side flares up including optic nerve

right hand squeezing grip causes zing in brain

weird gurgling in stomach and intestines, top to bottom, comes and goes

leaking stool, comes and goes since February. diarrhea comes and goes

trouble swallowing. very occasionally, once in the last 4 months, 3-4 times in the last 2 years. feels like the reflex swallow won't happen.

full ears feeling (too much b12??)

water retention and salt intolerance

flashing light in vision when startled

tingling, fat tongue feeling, esp. when I drink water sometimes

decreased libido

gut punched depression/anxiety feeling every morning on waking. does not happen when i wake before 5am. passes within an hour or so.

pressing swollen neck at base of skull causes severe, instant panic as well as right side weakness and optic nerve pressure / vision weirdness

occipital nerves on head very inflamed, esp right side, sometimes hard to lay down. much better than it was though.

tremors and head pressure started about 1.5 weeks before all other symptoms.

all of above symptoms came on around the same time, along with many other b12 deficiency symptoms that have since resolved.

shaylynn
shaylynn
in reply to blue2323

How long approx did it take for your symptoms to resolve? I too started with tremors and head pressure/lightheadedness.

blue2323
blue2323
in reply to shaylynn

I just found out I have occipital neuralgia what is being treated with steroids now and I'm hoping that will help resolve the last of my symptoms. My occipital nerve is trapped in my neck and when I press on it bad things happen. I have to have an MRI to rule out anything pressing on it but I suspect it's related to the deficiency.

Lyynn123
Lyynn123
in reply to blue2323

Wow. That is something to think about. Keep me updated how it goes. How did you ever come to figure that out?

blue2323
blue2323
in reply to Lyynn123

I finally got in with the neurologist! He was great and knew right away what it was!

Lyynn123
Lyynn123
in reply to blue2323

Did you have numbness in your head at times with the headaches? I feel my headaches also tend to be more on the left side, starting from my neck all the way up to the top of my head and even behind my left eye sometimes.

blue2323
blue2323
in reply to Lyynn123

yes, exactly that... except mine is mostly right side. Do you ever wear anything around your head like a CPAP or a sleep mask? My neurologist said that can trigger it so I stopped wearing my sleep mask.

Lyynn123
Lyynn123
in reply to blue2323

No I don’t wear either of those. Wow ok this is so enlightening. I am going to talk to my neurologist about this. How did the neurologist diagnose this? Was it an X-ray?

blue2323
blue2323
in reply to Lyynn123

No, when I showed him the spot on the back of my head that sends me through the roof when I press on it apparently that was the diagnostic sign for occipital neuralgia. Who knew? Certainly not my GP! Steroids are definitely helping. I hope you can get some relief too!

Lyynn123
Lyynn123
in reply to blue2323

Thank you. This is good info! Keep me informed of your progress. Happy you are healing. 😊

blue2323
blue2323
in reply to Lyynn123

Thank you! I will! MRI just scheduled tomorrow - eek!

I don’t think that there are any hard and fast rules about how you should feel after a set amount of time. Everyone’s starting point and response to treatment is individual.

blue2323
blue2323
in reply to JanD236

Oh I know, that was totally not my point. I just wanted to hear from other people who were around the same place in their journey, that's all. Feel free to share or not share as you feel comfortable. I just like knowing I'm not alone.

Hi, it has been 4 months since my loading injections and I am feeling all my original symptoms come back pins and needles arm and legs, muscle spasms, tiredness, low mood etc. I have been back to Dr’s and they won’t even think about giving me more injections until they test my bloods again at end of feb. I’m now struggling to sleep as pain in arms is so bad. Having Reflexology done to see if that makes any difference(probably not) and I’m looking into going private to see a Haemotologist.

What are your symptoms? Xxx

blue2323
blue2323
in reply to Jessie8

oh gosh, that's so frustrating! Can you self inject? I hope you can get it figured out. My symptoms are in a reply above. I'm taking it orally because I don't have PA and can absorb enough. I'm still trying to get my dose straight though. Don't give up!

Hey blue -- I am exactly four months since my first B12 shot, and as I've said here, it's been a very rocky and uncertain road. I think you are right, it's sooo important to hear other people's journey. Yes, we are all different, but I think because my response to treatment has been so slow I would have somehow talked myself out of believing in my PA diagnosis if not for the people in this forum who have described their own likewise slow response. I believe I had pretty severe neurological symptoms and the cause was missed again and again because I never presented with anemia and had other red herrings to chase (such as hyperthyroidism which can cause tremors).

After four months of frequent (2 to 3x a week) B12 in IVs and shots, I do sense about 50 percent improvement in my worst symptoms: the disoriented mental state and feelings of unreality. I can focus better on work now (although still can't find my words, which is a problem, I'm a writer!). The pins and needles numbness in my hands is a lot better, I can hold a pen at last. Blurry double vision has improved also about 50 percent, the dizziness is still there, but not near as severe, I don't have to cling to the shower bar in the shower anymore for fear of pitching over. I am 100 percent improved in the staggering, stumbling walk and weakness, as well as the numbness in my legs that made me feel like I was floating, those were the last symptoms to develop and the first to disappear.

But there are a few areas I don't notice improvement yet. One is hearing loss (I can't hear the dialogue in movies). And another symptoms that drives me mad, this inner electric buzzing sensation, rippling waves of sensation up and down my body, which ---before my intrinsic factor positive blood test -- I'd first believed to be a hyperthyroid thing (its not) and then believed was result of some faulty perception from some kind of unknown brain damage -- because why else would my mental status change so much? Now I understand it to be PA damage to my nerves and nervous system, and I really hope it goes away someday. People here have said it can take a year or more to know how much you can heal and what might be permanent. So onward I go, and I find myself able to be more patient and accepting of the process as I go along... But oh how I long for normal....

Lyynn123
Lyynn123
in reply to teebeevee

Teebeevee the rippling waves up and down your body... I just recently got this new sensation. Not sure if it is the same but you are the first person I have read this as a symptom. I describe mine like a tingling skin sensation. Not the pins and needles feeling but a more tingle. Mostly on my arms but also other para of body. I know new symptoms can come during treatment but this one just kinda through me cause I didn’t see anyone else having this symptom.

teebeevee
teebeevee
in reply to Lyynn123

I hear you! I never see that odd symptom on those frustratingly short, terse lists of symptoms you find on medical websites. It was only here on this forum that I finally found myself described, and feelings that I'd been having for months that I hadn't even tried to put into words. And you're right, its not like the pins and needles I get in my hands and feet, it's different. For me, it feels like little waves of unpleasant goosebumps, whoosh, whoosh, almost in a regular rhythm up my back. Or kind of like that ripply little electric misery you get over your body when you have the flu. It comes along with this jittery, drank-a-hundred-cups-of coffee buzzing feeling, and both together make me feel like there's something weird and wrong. If I can get that feeling to leave, I will be doing a big fat happy dance!

shaylynn
shaylynn
in reply to teebeevee

Yes! You are describing it exactly. And you are so right about the terse lists online. They are short repetitive lists of symptoms that are so vague. It was only here on this forum that I also found a sort of relief in knowing I am not the only one having all kinds of strange feelings. Thank God for this forum! It was weird how mine came on way later after I started injections though. How long have you been treating B12 def and how long have you had this symptom?

blue2323
blue2323
in reply to teebeevee

I really hope that all resolves for you. I really long for normal too and I cry every morning. I just want to be able to live my life. I just finally saw the neurologist and got a diagnosis of occipital neuralgia. With steroids some of my symptoms are getting better so I have a little bit of hope with that. I have to go for an MRI to make sure there's nothing else more serious. We'll see. Hang in there and don't give up!

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