After I changed my way of supplementing myself an switched to hydroxocobalamin I think my symptoms are getting improved but are so slow. I have not much numbness in my hands ,back and neck up to skull but still have double vision blurry eyesight and weakness in my muscles but improved , still feel too much pressure when I stand and walk. All of these symptoms started when I tried exercise for two months right after megaloblastic aneamia and my dizziness was started. I don't see any light at the end of the tunnel yet but my symptoms improved. Now I inject every six days ( 4 ampoules injected) ( I inject cyanocobalamin for nine months around 45 ampoule) and take methylcobalamine timed release 15000 mcg a day and also take activated firm if b complex along with iron pills( roughly one to two times a week).
Does anyone else have muscle weakness like feeling pressure when walking or standing and even sitting on chair). I think my muscles are badly damaged during b12 deficiency period and needs long time to get recovered. Is there any other complication cause to this extent of weakness. I don't know but I had improvement. I don't know how long it takes to get rid of this horrible disease, but I think it's gonna take at least two years in optimistic calculation way. I don't know which specialist can help but now I know I can't even tolerate anti anxiety pills since I lose more muscle power after taking that.
Any one else have this type of symptoms I mean mostly muscles involvement and also double vision, blurry eyesight?
I feel my stomach muscle tormented and I have weakness in my back muscle and thigh muscles. Feel too much pressure on standing sitting and walking.
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Hamayeshguy
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I haven't had any visual issues, but I found my muscle weakness almost frightening. At my worst, when I lay flat on my back in bed, I was completely unable to raised my straight legs up even an inch off the bed. And I could not not sit up at all - my stomach muscles refused to work that way. I could raise my head up, but that's all. If I wanted to get up out of bed, I had to role on my side and use my arms to push me upright. And when upright, my stomach muscles felt very weak and worn out. I couldn't even sit upright in a chair for an hour before they gave out.
I'm very fortunate that I was diagnosed and treated promptly. My muscle weakness improved quite a bit within the first 10 days of daily injections. I'm still quite limited, but I can now raise my legs and even sit up to get out of bed. My stomach muscles are still far from normal, but I can do a small amount of daily activities. I'm hoping for steady improvement as I continue treatment.
I also had the weakness - it has improved with injections, but I still struggle. The most alarming was when I couldn't get out of the bathtub. I had to struggle over on my hands and knees and crawl out. So very frightening so I empathize.
I'm going through the exact same pain minus the visual site. I have increased my injections to every other day and I think it's making my pain worse for now but I'm hopeful it will make remarkable improvements. I'm optimistic anyway
Hi - I have almost all of your symptoms to some degree. I'm not a medical professional, but happy to share what I'm doing to get some improvement - I'll post this in the main thread as well. I am an retired old officer with some "medic" training so am comfortable with needles - though even I needed to take a deep breath and some encouragement from the wonderful folks here to get started.
I have started to inject a "complex" of b-vitamins:
I am not on a regular schedule for the injections - rather I base it on an intuitive sense of how I'm doing. If I feel neuro symptoms coming back or my brain fog, pain, fatigue, or irritability are worsening, I inject.
I take high doses of Vitamin D drops and 3 Iodine drops in water every morning.
I add liquid iron to juice daily.
I take time-released melatonin at night
I am also experimenting with high doses of Vitamin C to combat digestive bacteria & improve nutrient absorption. The recommendation is to take 1000mg on the hour until (sorry) diarrhea sets in - to clear stomach and upper intestine of infection. It's good to also take a regular dose at night so it has a chance to work on an empty stomach.
Fun fact: I hate swallowing pills!
I'll follow this with small morning glasses of Basil (Saba) seeds soaked in warm water to heal and sooth the digestive tract.
Also - I was tested for ATP levels (essential to energy production) and I was low - so I am taking D-Ribose to shortcut the process and support ATP production. But since I am not absorbing nutrients properly - not sure how effective this is.
BUT - with all of this, my energy levels have improved and my neuro symptoms are steadily receding - very slowly. I still have down days where I basically rest in bed all day with severe mental and physical malaise - but those days are getting further apart.
Still an issue - pain and stiffness, hearing and vision issues.
I also have been prescribed Escitalopram drops for anxiety that work very well.
I am only 58 - so all my issues seem to be a bit early to be simple aging. If anyone has any recommendations regarding my above regimen - I'd be grateful. I am doing a lot of exhaustive research and trying to educate myself - but I feel like I am in a race to save my health - and so many of the micronutrients are connected. All of my nutrient levels were tested very low and it has taken me months to get in for endoscopy - now scheduled for Februrary (yay!). Also any advice on an edoscopy would be really appreciated as well.
Just want to add that high doses of vitamin C are not recommended for someone with kidney issues. It can also cause increased absorption of iron - which could be a problem for some folks. Don't want to give advice - just a view into what I'm trying in case it might help someone else. Thanks.
I take vitamin c with iron pills 40 days ago my feritin is around 39 and that's why I don't take iron pills more than two times a week. I'm 48 but I didn't have much symptoms before megaloblastic aneamia a year and half ago but after megaloblastic aneamia in just two months all if my symptoms developed by starting some light exercise my symptoms started to get improved by taking B12 pills but slowly. I live alone and it's so challenging for me. I take half of quetiapine 25 mg some nights for sleeping and anxiety but I have numbness in my hands and back and neck but it's improving and this pill lake me deep sleep and with that numbness sometimes it's impossible Escitalopram is SSRI and since I take naproxen alot can have interaction. It's look like my muscles lost their strength just in two months and now slowly getting improved. Practically I can't do anything and that's frightening me. I'm trying to join my family in other place but I have to fly long hours plus airport processing time and I'm waiting to get improved further in order to tolerate long flight. I live in Canada and cold weather bis another challenging issue. I think B12 B6 is not necessary since long term using them can be harmful especially for B6. May try neurobion once but I think not be effective like jab and pulls like I'm taking
If I were you I would stop the methyl tablets, and stick to the hydro. Injections. AT night try a mug/glass of milk (warm if you like). Its all trial and error, but I think sometimes trying too many different combinations all at once you are not finding out what really works for you.Keep it simple for yourself, Note down what you have taken/eaten, this way you might be able to eliminate food or medication that doesn't agree.
Methylcobalamine helped me alot even more than hydroxycobal Amin jab but my symptoms started and developed so fast and after taking high dose of methylcobalamine is getting improved. I have tried by one one and reached this combination
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Why am I not getting better?
Why can't we get them here over the counter?
why am I B12 deficient?
