Hi I am new on here, but have been reading the Forum on and off for a several weeks now after trawling the internet trying to find out what was wrong with me.
probably two years ago, I started going to see my doctor with various symptoms, initially it was pains in my leg, and not being able to lift or bend my leg properly, I was given an Xray? and told there was nothing wrong, I was then starting to get out of breath, couldn't walk up a flight of stairs, couldn't even walk up any slight inclines without shortness of breath keep having to stop, and my legs feeling like lead. I was having palpitations, never mind the fact that I was tired all, and at the same time not having a decent nights sleep. I felt like I was a hypochondriac because I was just kept being told there was nothing wrong with me.
I had tried to join a gym to see if I could get myself fitter and was referred back to my doctor as my BP was through the roof so was put on BP medication, but I was still having all these other problems, that were getting considerably worse, In the mornings when I get up, I stagger all over the place, loose my balance, stumble into walls/doors, it settles down after a while, but sometimes during the day I loose my balance and will walk into a wall or a door.
My arms and hands go numb and get pins & needles in my hands and feet and feet go numb.
At my witts end I paid for a wellness check to be done, as to be honest, I thought I was having heart failure (I am 53), I had asked my doctor if he would check my heart and he said no there is nothing wrong with my heart, there is nothing wrong with me I am not 18 yrs old any more.
About 5 weeks ago, I got the results back from my wellness check, with 3 of the blood results highlighted in RED saying I need to see my doctor, (haven't got in front of me, but one of them was Mean Cell Value I think), anyway I went back to my doctor with the results - He glanced at them threw the papers across his desk back at me said there is nothing wrong with me, he has done all those blood tests and there is nothing wrong with me, Look in the Mirror you are fit and healthy! I am just getting older, so I am not going to be able to do the things I did 10 years ago. Basically I left his office crying.
So now being desperate, I started to trawl the internet to just try and find anything that related to those test results, and from that worked out I was probably b12 deficient. I went back to my doctors, but went to see the nurse and asked her to do a b12 test, which she did, the results came back at 246, I went back to the doctor, and he basically shouted at me again saying I am not b12 deficient, I am well above the minimum range (180), so that was that.
I then a couple of weeks ago found the b12d charity as I was trawling the net, I filled in their form, and the next day had Dr Chandy calling me (I wasn't expecting a call or even an email to be honest), he was on the phone to me for about 40 mins explaining everything.
Now I feel like there is light at the end of the tunnel, and there are so many other symptoms that I have that I had didn't realise, I have lid lag, my husband noticed it about 8 months ago where one eyelid is a lot slower at opening when I blink, I am totally grey and have been for a long time, I cannot think straight sometimes, forget names, and can be in mid sentence and cannot think of the next word, brittle nails and pronounced vertical ridges on my nails.
I started Loading doses, (self medicating) last week, but run out tonight, and now waiting for supplies to come from Germany am on the waiting list so I hope it will not be too long.
I think more than anything, realising that there are other people out there suffering and dealing with doctors who do not want to look at the whole picture or think outside the box has helped, as I really thought I was going nuts, and that I had heart failure or something.
Sorry for the long post, and thank you, as I guess many will agree, knowing there is someone out there that understands & listens really does help