Pernicious anemia

[littlemisshurty]

Does anyone else suffer with this? Dr told me I have this and put me on vitamin b12 injections...but he didn't tell me it's a motor neuron disease..this along with fibro has kind of got me worried about wasting away..it's also why my hair has bee falling out...I'm scared now I know what it is I just thought it was anaemia..

[Hidden]

My mobile hairdressers mum has it and has had it for years ... She has the same injections as you and manages fine .... Hopefully some one will nip in who has the same or knows some closer to them who has it

Fingers crossed

VG x

[ladymoth]

Pernicious anaemia isn't a motor neurone disease as such, but if it is left untreated it does affect the motor neurone system.

So long as you have your injections of B12 you should be fine, and will probably see a big improvement in your general health and your hair! Give it a month or two and you should notice a huge difference.

Hope you feel a good change very soon.

Moffy x

[fairytails]

ive had pernicious aneamia for two years now and have regular b12 injections every 3 mnths it does help and yourl notice the pickup after youve had it it doesnt stop the fibro pains but just helps xxxx

[littlemisshurty]

Thank you I was worried cos I read it at silly o'clock cos I couldn't sleep..why I got mix up...I really hope my hair stops falling it used to be so thick now it's whilst and you can see my scalp thru my fringe.

[Hidden]

Hi

I was diagnosed In October last year so had my 5 loading doses and then went for my first 3 monthly jab in February. I can't say I have noticed a big improvement but hopefully things will improve. Have you had your thyroid and iron levels checked via a blood test as low iron levels or an underactive thyroid can lead to hair loss.

[loppyloo61]

Hi, I too have pernicious anaemia, its our body unable to retain Vitamin B12, hence the need for B12 injections. I started with daily dose, then week, monthly then the "norm" of every 3 months. Once these injections have kicked-in and boasted your B12 you should start to feel alot better. I suffer with loosing my hair toobut was told it was more to do with stress rather than pernicious Anaemia!

Once you go onto the recommended 3 monthly injections, if you feel your symptoms are returning before the due date of B12 Injection, have no fear of quering this with GP or whoever put you on the Injections as I find I can"t go any longer than a month and have to have Injection on monthly basis, They tried 2 months but just could"nt make it, so don"t fear if you start to feel unwell again before 3 months is up.

I call mine, "My petrols due" as I know without looking @ a Calender when my B12 is due!! All symptoms start to come back. If I see new Dr they always question me on my monthly dose but is it possible not to be able to last for 3 months, if you are having difficulties, do not hesitate to go back and explain this to them!

It did unfortunetely take me long time before anyone believed me but was in hospital for 2 months and then they could see for themselves needed them monthly.

You cannot over-dose on B12 Injections either.Good luck hope you manage to cope with them 3 monthly. Also say if you have it in whichever arm, to rest that atm for 24 hours & alternate arms!

Good luck BB x

[littlemisshurty]

Thank you it's so good to see I'm not on my own...silver star I have a underactive thyroid for 25 30 years I'm on 200 mg of thyroxine...I had a 3 week period while I was having my b12 is that normal cos that was making me feel terrible I also came out in spots all over my back..I take the mini pill to stop my periodicals i am so anemic I pass out I've been I hospital so many times last time they told my parents in front of me prepare to the worst she's terrible sick I spent 2 weeks on iv and no one checked my b12''''then when the nurse took out of she didn't stop the blood coming out I was talking with my head turned when the girl next to me screamed omg your blessing there was so much blood on bed floor my clothes I thought threat I really needed to lose that blood I also had a transfusion 16 years ago and I was nearly dated after surgery..I kept saying I can't see and I can't walk and they said come on don't be lazy go down stairs to garden get air you feel better...lazy? I ha major surgery 2 days b4 I ha drains attached.any way I was passing in and out of consciences and no one would help..then I had tunnel effect...I heard my man's voice she wasn't with us anymore but it was her and she called me I ignored her it was so peaceful then again I said no let me go..3rd time louder and I woke up we my mum and sis coming down corridor...I looked up and passed out..sis came running in screamed for help mum woke me..the nurses came in mum said what the he'll is happening why is she in this state while your laughing and joking outside the door wecouldseesomething wrong half way down corridor..they said we told her get air ..mum sais down two flight of stairs like this...we thought she was being lazy...mum was furious anyway they took blood presure it was so low I was awkwardness they tipped bed and took blood test got me blood transfusion tested me for thalassemia but not b12 yet again..I was so I'll everyone though I was dying.and it's happens on my birthday in a pub..I had not drunk a thing I stood at door said to my friend I feel sick it wen black I threw up and passed out...no one helped me all looking at me and my friend said an someone call ambulance nope all thought I was drunk so ignored me...my friend said to one person please she has low blood presure she's not drunk then two men helped me up and sat me on a bench..again go so ok tail no fit b12 check I could go on...I don't get it.

Thanks for listening xx

[mumpie]

Hi. I have never writen anything before but as my dad was diagnosed with this when I was 2 days old (1960) I thought I tell you about him. To start with he had to have injections every day eventually had them every month or more often when needed, he taught to do them himself. Sadly he died when I was 30 (1990) of cancer, nothing to do with this we checked with the drs when he was 1st diagnosed with the cancer. During this time he lead a normal & active life.

[littlemisshurty]

It can bring on cancer or stroke Dr said if not treated properly cos red blood cells die off but thank you for writing sorry about your dad you were so young to listening xxx