Ok, so I've just had my second B12 jab on day 3.
I've felt nothing since I got the first jab then this morning when I woke up, I didn't feel as if I had been run over by a juggernaught, maybe just a bus 
I feel a bit less tired and the BIG thing, although I still have tingling, the stiffness in my fingers is definitely not so bad.
Is this possible this quickly for B12 to be helping or am I just imagining it?
Feeling hopeful!
DB
Hi DB it is very possible. Within a couple of injections I felt more awake and alive. Many report early symptoms improvement but others take longer. It took more like 8 weeks for neuro symptoms to resolve for me though.
Keep it up!
š
Thanks Secondchance - I am so excited at the prospect of feeling well again
Yes it is a great feeling!
Hi Secondchance,
I see by your comments here, that it took you 8 weeks for neuro symptons to resolve. What kind of dose were you on if you don t mind me asking? As I have neuro symptons and although injecting is giving me my energy back, neuro healing seems very slow.
Many thanks
Lizh
Hi Liz
I was on alternate day hydroxocobalamin 1mg injections and supplementing with methylcobalamin tablets (started 1mg but moved to 5mg and that helped finger sensations), methylfolate 400mcg and B complex 50 (both Solgar and Jarrow from amazon). This helped me with falling and being unsteady at night and in the shower when I closed my eyes to wash my hair, right leg weakness with right foot drop and ataxia gait and pins and needles and numbness in feet. I had complete lack of vibration sense in my feet which came back within the 8 weeks on examination. Other things that improved were hair loss, energy, feeling more awake/alive and being able to lose weight (although I did change to Paleo gluten free diet as well at that time).
Despite the massive improvement on B12 injections the neurologist said it could have been a coincidence. Yeah, right! Some coincidence- blood test shows B12 deficiency, it gets properly treated (with a bit of a battle) then symptoms improve. Mmmm...
Wow Secondchance, a complex mixture. Why did you mix the injections with tablets? And how did you decide upon your correct dose?
Unbelievable that your neurologist said the improvement could have been coincidental... Words fail me... Is it just sheer arrogance or ignorance.
So glad to hear you improved so much, a lot of my symptoms are similar to yours & I know the feeling of problems walking in the night/showering with eyes closed...
Gives me hope.
Lizh
From reading up I realised that I need folate to use B12, then that B vitamins work as a complex so I added both so that I didn't become deficient in something else. Now I only take these around injection time- not every day, but that's how I started. I added methylcobalamin tablets as I read that it was a more active form and that it was good for neuro probs.
Yes the neurologist was extremely dismissive and I found him very arrogant. My husband came with me and corroborated the massive improvement especially in walking and that he correlated this with B12 too but that was ignored. He was also dismissive of the doctor who examined me at the beginning and found lack of vibration sense in my feet. Nothing was put in the letter about my family history of PA "no relevant family history" or the (what I now know is) characteristic falling/unsteadiness in the dark and some of the symptoms were recorded incorrectly. I thought about complaining then decided he wasn't worth my effort and I was just glad to be getting well again.
Yes there is hope for symptom improvement - good luck!
So glad you're recovering/ recovered so well.
I feel as though there needs to be some sort of B12 revolution!
As there seems to be SO many GPs & neurologists who either choose to ignore or are else ignorant of how B12 deficiency can effect the lives of individuals & consequently people around them...
Take care
Lizh
I totally agree!
Just as Liz_H said :
I've had all the 6, loading Hydroxocabalamin Injections; next one will be on the 10th of August.
So far I've not seen any significant recovery in joint movement and nerve endings.. I suppose it depends on the amount of Neurological Damage you've done over a long period of time; and not seeking medical attention??
B12 injections and vitamin supplements will help alleviate some of the symptoms; although PA B12D, symptoms are numerous and varied; and can change from day to day.
Someone mentioned that (depending on damage done) the recovery can be frustrating; your on the up one day, and feeling dreadful the next.
No quick fix; it's more of a marathon than a sprint to feeling better, full recovery could take YEARS? not months.. but with the correct help; there seems to be light at the end of the tunnel ..
Yes my path was a bit up and down. Initially some of the neuro symptoms actually got worse- intense lower leg burning at night and a wee bit of a tremor at times in my thumb, but these settled. One of the issues was the B12 definitely improved my energy and I sometimes did mad things like do gardening and then power hose the entire back in one day which knackered me. It is important to pace yourself as that then set me back for a couple of days.
Hi Secondchance,
I know what you mean. I think my road to recovery is going to take quite some time.
My GP and Rheumatology Specialist; seem to think I've done some serious damage to myself? if only I'd sought out some medical help 4, or 5, years ago; perhaps the damage I caused would not have been so severe?
I'll explain,
I'm now 67, years young; and during the previous 50, years or so of my life, I'd taken part in all sorts of sporting activities : Bicycle Road racing, Time Trials, Marathon Running and progressed in to Triathlons. There were also other active pastimes (hobbies) such as Water Skiing, fly fishing; and loved Ballroom dancing.
My problems began 5, years ago; wile running only 3/4, miles (a relatively short distance for me at that time) I experienced numbness and strange sensations in the soles of my feet. I eventually had to stop any running activities, put it down to having Arthritis and old age etc... But, as time went on I seemed to be getting worse; what with ankles swollen - soles of feet sore (even walking any distance was difficult) and other joints continually aching.
I was getting weaker and less active; followed by illness after illness until even walking the length of our sitting room was difficult. I'd not realised my immune system was shutting down!
My wife was getting fed up with me; and my reluctance to visit the GP's surgery, so I decided to make an appointment. Saw a Lady Doctor, who passed a remark; that I'd not visited the surgery in the last 3, years. ( I so dislike having to visit a GP) She examined me; and her initial prognosis was : Osteoarthritis. She referred me to the Rheumatology Dept at the Hospital; and also requested some blood tests; luckily for me, I had them done immediately. The following day I had a phone call from the GP's surgery, asking me to return for more blood tests.
I had quite a few problems going on in the blood test results : B12 - 130 - (18 - 900) Folate Lowish .. Ferritin Low. Plasma Viscosity 2.22, High (sticky Blood) Raised Red cells Inflammation! Normal blood Count below 10, (- 15) Etc...
Seen the Rheumatology Specialist; and waiting for an appointment with another type of specialist; who deals with Veins and Arteries .
Had all 6, loading injections; and there is some slight improvement in energy levels; but the neurological nerve endings are going to take some time to repair.
You have had a lot of neurological symptoms over quite a period. I would suggest going back to your GP with copy of BCSH guidelines, which recommend alternate day injections for neuro symptoms until no further improvement with review after 3 weeks. NICE guidelines and BNF recommend the same. Unfortunately many GPs think anaemia has to be present- this is wrong. 30% people only get neuro symptoms. I had no anaemia.
onlinelibrary.wiley.com/doi...
FB count, was below 10, anaemic and I've always had a low blood count; even when I was younger.
B12 injections will be every 10, weeks instead of 12. but will take some Jarrows methylcobalamin sublingual tabs in the mean-time.
It would be interesting to get your blood checked after having some B12- it should show a response if the anaemic is at least partially due to B12 def
Correct help mmm. Please translate. I ve been under a neurologist for 3 years, and this problem slowly progressing for 10 years & the best help I ve had so far is from you lot on this forum.
How often are you getting a B12 injection?
Lizh
I wonder if recovery would be quicker if therapy ie B12 injection was more frequent?
I m self injecting and feeling I need a hell of a lot more than prescribed in the BNF or NICE guidines...
Lizh
Nystom, I am so glad I read this. I felt nothing until 3rd day after my 2nd injection - energy levels were DEFINITELY better. I had the best day I have had in 18 months and was elated- next day I feel AWFUL and thought maybe the "recovery" was psychological.
I am just going to hang in there and now that I know it is an up and down type recovery then that keeps me feeling more +ve.
Another definite for me - I have had lumps on the roof of my mouth for years and was sent to dental hospital last year. I was told they were blocked salivary glands - possibly related to sinus problems that I have. Since getting my first Vit B injection, after 2 days, the lumps went and have stayed away!!!
Lucky you!
I felt so much better after my 3rd injection and things got better and better.
My b12 was 120 very low.I sometimes have to use an oral spray I between my 12 wkly injections but not always .
Hope you continue to improve.
Good luck
X
Nope, you're not imagining it. Within about two days of my first loading injections I felt marked and noticeable pain relief in my mouth from trigeminal neuralgia "the worst pain known to man" and nicknamed the suicide disease. Heavy anti-convulsant drugs hadn't been able to shift that, so no, you are very likely feeling the good results. Long may it continue for you.
Me again, Dbee, I see you are worried about neurological effects and the time they take to clear up. I should just let you know my TN is a neurological disease, so it worked very quickly for me. It did take two full months though to get complete pain relief and for it to send the TN into remission. I am still on anti-convulsants, but so far, fingers crossed, the pain has never come back and I have managed to reduce the drugs to less than half and am still reducing them. Hope you have the same good luck.
Thanks Chancery. Glad to hear you are having positive results. I am going to keep thinking positively and taking the injections
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