Can someone please help?

[soflamingtired]

I've had B12 problems for the past 10 years now, the first time it dropped and my level was 44, I was on injections everyday for 2 weeks and then 3 monthly's. After a year the docs tested me and B12 levels were fine (which they would be after a year of jabs) and they took me off them. I was ok for about 6 years and I started feeling ill again and recognised the symptoms, docs checked B12 and it had dropped to 81. Had a schilling test and everything was fine, so they started me on 3 monthly maintenence levels to stop it dropping again. I still dont have a reason why it keeps going low. Anyway I've been back on them for the last few years and I'm having spells of pins and needles and/or numbness, electric shock pains, pain in my left eye, clumsiness, sleep problems even though Im exhausted all the time, somethimes I can't think or gt my words out and feel 'off balance' when I walk, and I don't know what to think. the injections arent making me feel any better at all.....has anyone else had this? And what could it be?

[soflamingtired]

Had my appt today with the opthamologist due to vision changes.....he said I have a pale optic nerve that suggests I've had optic neuritis, I'm booked in for a CT scan on Monday and field test. STILL not hd an appt from neuro, god knows when I'm going to hear from them. GP has said there is a possibility that it could be early stage MS. I haven't felt right at all since the last lot of pins and needles, they've gone but I just don't feel 100%.
We took the kids out for the day on bonfire night and my mum litterally had to help me back to car I was in so much pain wit my legs and I could hardly walk for the next 2 days, I feel old before my time some days. How have you been getting on Mandy?

[soflamingtired]

Hi Mandy, I'm sorry to hear you're not feeling any better yet, but I'm glad you're thinking of a second opinion. Thankfully I have no symptoms at the minute but I feel like I'm just waiting for them to come and I dreading it, I've had four 'episodes' now so I'm fully expecting fifth. I also hae the juumping awake thing, but I think near enough everyone has that at some point. I'm not sure how long my appt will take to come but I will let you know what happens. Have you been seen by a neurologist? It might be worth asking if you haven't seeing as our symptoms are pretty much the same. Take care !

[mandy478]

Hi tracy...I feel for you...I am in so much pain with these pins and needles I came close to taking myself to the hospital today but ended up back at my doctors (yes considering another opinion) I had to hold myself up in the shower this monring if I close my eyes to wash my hair I feel I am going to fall over...the pains in my extrmities has got beyond a joke now so they gave me a B12 shot...they say I have a fatty liver too...I hope all goes well and plese let me know the outcome...oh yes I have fuzzy vision sometimes and the eyes do flutter...I find just when I am nodding off my body all of a sudden jumps which wakes me up its damn annoying....bye for now

[soflamingtired]

Well I got my blood results today and they are all normal apart from my liver which is slightly raised. My doctor said I have something called Gilberts Syndrome and is completely unrelated to my neuro symptoms. So again, diabetes and B12 have been ruled out as the cause, and he's reffered me to a neurologist, now I'm quite worried. I have no idea what to expect or even what they are looking for. Can anyone give me an idea of what the neurologist might say/do?

Much appreciated :o)

[soflamingtired]

Thank you so much for your post, my B12 levels have been normal for the last 2 years yet I'm still having these sporadic symtoms and they appear in a different place each time, is this normal? and as far as I was aware I shouldn't be having any neuro symptoms while my B12 is in normal range or is that incorrect? As I explained I have no cause as to why it has been low, I'm absorbing fine and and I have plenty in my diet. I'm not on any meds and I definitely don't have tapeworm. I can live with not knowing why I have a deficiency, but what I'm struggling with is these 'episodes' of symptoms I keep getting. Someone mentioned the possibility if MS and frightened me half to death and then I had read there is a correllation between B12 problems and MS patients. could you please explain to me what subacute combined degenerationof the spinal cord is and how would this affect me if I had it? Thank you so much for your help, people have been looking at me like I am crazy, they don't seem to understand that just beacuse I don't look ill, it doesn't mean I am well.
Kindest Regards
Tracy

[Dr Sharma]

Welcome to the medhelp neurology forum. Thanks for writing in. your symptoms of Vitamin B12 deficiency have persisted for almost 10 years now. Neurological signs of B12 deficiency which you are suffering from  include sensory disturbances due to peripheral nerve damage following demyelination and irreversible nerve cell death. Symptoms may be tingling and numbness of the extremities, altered proprioception, impaired smell, anorexia, disturbed coordination and an ataxic gait. Extreme cases of deficiency can lead to subacute combined degeneration of the spinal cord. This could explain your symptoms. Also known to be related to B12 deficiency is nerve shock in the side of the body felt as coming a few seconds before it hits and then diffuses.  There are many causes of deficiency apart from poor intake. Poor absorption due to intrinsic factor deficiency in atrophic gastritis, fish tapeworm gut infestation, malabsorption states, diabetic medications like metformin, hereditary homocystinuria or transcobalamin deficiency. Serum homocysteine and methylmalonic acid are more reliable indicators of Vitamin B12d deficiency tan B12 levels itself. Regarding route of administration, there is no proven benefit of parenteral over oral. You could try intranasal or sublingual route with some improved absorption. I hope this information helps.

[soflamingtired]

Hi Mnady, thank you so much for replying. I am currently having bloods done (yet again) although I'm not sure whether they will check Vit D. I am currently clear of any symptoms (apart from tiredness) but I now feel like I'm just waiting for it ti come back. I've had 4 spells over 2 years now, although the first time my B12 was really low so I assumed that was the cause, however the last 3 have been while I've been on injections, so oviously I'm worried something else is going on!!! The doctors has said if these bloods come back clear he's going to refer me to a neurologist. Can I ask do you also get uncontrollable fast eyes movements? As this has started over the last 10? Months or so and seem far worse when I'm trying to focus on something. Do you think it might be worth you having a second opinion on your dx, it does seem strange considering where you live unless you never leave the house of course, I hope you're feeling well soon, take care :o)

[mandy478]

Hi my name is mandy I am in australia I have had very similar symtoms I have had all sorts of blood tests done and I initially thought I had B12 problems I used to have injections too...now they are saying its a vitamin D deficieny which is crazy considering I live in australia..I have the exact same symptoms and I find it hard to walk the numbness is driving me crazy and I have ringing in my ears too..my mind feels foggy as well so I know how you feel..all I want to do is sleep also..have you been tested for Vitamin D????  just a thought...I hope this helps a bit and I am relieved I am not the only one suffering..hope you get better soon take care..