Hey Gecko.....
Seeing how this support group, with health issues, works is awesome. I didn't expect to get a notice of statement of someone else being diagnosed with this anemia. I would, first, like to ask you a question---Why were you going to a oncologist/hemotologist to get the bone marrow test? What precipitated that?
Anyway, I just turned 60 and was diagnosed with this last April. I had been feeling bad for almost a year---exhausted, always cold (to the point of torture) off balance, couldn't think, had problems figuring out things that i had done for years. Big, big challenges with driving. I started to fall, alot. Couldn't figure out how to get up. My husband and I just attributed it age. I thought "Whew 60 is the new 80!" While at a University of Virginia baseball game, returning to the car-----I just fell flat out on the side walk and tore my face up. A police man witnessed it and demanded a rescue to the university hospital. I couldn't get up. First----they thought it was a stroke. Then some type of neurological seizure or something like that. It was at a check up at the neurologist that they discovered my levels of B12 to be very dangerously low. I had gotten to the point that I couldn't even walk without assistance. It has been a very long haul and it still is. I give myself my shots because I have to have them every 14 days and I got sick of going to the doctor's office. I still struggle with this and it has effected my life, tremendously. I have to work so that takes up just about every ounce of energy i HAVE. My advice to you-----don't expect your anemia to be like anybody else's. I spent many months thinking that I just needed to toughen up. I also deal with depression and a mood disorder-------so this effects that part of my life alot! Every week is different and I have figured out that I can't go over 14 days without an injection. Within a few hours after taking the shot I feel like the person I use to be. For days----depending on the stress I am under-----I feel good. But, after I pass the 7th day----I get more and more tired and take the shot on the 14th day. My GP thinks that I should be able to do it just once a month. That, is why I have thought about going to a hemotologist. Another thing that greatly worries me----is the number of people in my family that have had leukemia. My brother, uncle and a 2nd cousin. That bothers me.

Too much about me. Word of wisdom-----your pernicious anemia will express itself in your body different from anybody else's. Sounds like you have other physical challenges, too. So-----have patience with yourself even if those around you seem frustrated.

I will be glad to hear from you, too!!!
Sparkleewater

Hi Sparkleewater!
Thank you so much for responding. I think I would have freaked out if that happened to me! Falling like that. I am so glad that you are doing a little better. : )
My story...... I was diagnosised with lupus in 2008. I had been on steriods almost the entire 2 years prior because they had no idea what was wrong with me. Being on the prednisone resulted in severe osteoporosis. After 2 years the medicines are finally working a little bit. Nice break.
Last September I started having a pain under my arm. I had a mamogram and ultrasound of the underarm area. They found nothing. I went back to my md a couple of times the pain was getting worse. Finally he sent me to get a cat scan. The scan picked up that I had an area in my sternum that was either an injury or cancer as well as swollen lymph nodes in under the arm that I have been having pain in (now it is really bad). I had the bone marrow biopsy and they found no cancer - but the bone is dead. The oncologist wanted me to have a bone scan to see if there were any areas on my bones. They found 1 area - but we are in a wait and see for 6 weeks and I will repeat the scan. They are thinking that I had more injuries and broken bones from a car accident that I was in 2008.
I had an apt with a surgeon to have my lymph node biopsied.
Is all of this related?? i have no idea.
The oncologist - he is so wonderful. I told him that my prev labs showed low red blood cells and high MVc - I think it is the size of my blood cells. He asked me to repeat the blood tests and test my b12 level.
He knew already I had anemia. He just wanted to double check.
Sorry if that was long winded!!!
I have a question about the B12 - is yours redish liquid? Does your urine have a redish tint?
I had my 1st shot yesterday. I really do not feel anything.
The oncologist told me that after having a couple of shots of b12 I will be able to stop. But I am reading that I need to take them for the rest of my life.
What did you MD say about you having to continue to take them?
Do you find any food makes you feel better?
Do you shake really bad if you dont keep food in your stomach.
Can you go to an hemotologist? I am so glad that I did - if only to diagnose my anemia.
: )
Let me know
Gecko

Dear Geko, i also have this and the cause is i only have 1/3 of my stomach left because of cancer. It took about 3 months for me to start to feel better. I do believe if it has caused any permanate damage that will always be there. I had all the symptoms you had too. It is something you will have the rest of your life. I give myself the injs. once a month. Please do not stop your injs. Big Hug

Not sure if this helps or if you are interested but I recently heard about a new oral prescription alternative to the injections called Eligen B12. I recently read that it works even if you don't have intrinsic factor (so even if you don't have normal gut absorption). Apparently it came out a month or two ago..