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Posted by NancyH on March 21, 2000 at 00:57:10:

In Reply to: Re: young pernicious anemia/please share posted by Karin on March 17, 2000 at 05:57:40:

: Hi, I was 36 when i was diagnosed with PA. The diagnosis came about because my breast fed infant son nearly died due to the lack of B12 in my breastmilk. I wish someone had beena stute enough to recognise the symptoms of PA in the many blood tests i had prior to and during the pregnancy. I also have been diagnosed with an underactive thyroid. I know i have to really look after my self as my son really needs me to keep myself fit and healthy.
: The b12 deficiency caused irrepairable brain damage to my son.
: I know I was lucky not to have suffered any such damage myself....but if i could reverse it so that it is I and not my son who suffered mentally from this condition...i would gladly change places.
: Karin
: : : : Hi! I am a 31 year old female who has just been diagnosed with PA. I work in the medical field so you can imagine my surprise when I was told my serum level was very low (170). I just finished the Schilling test also and am waiting on the results. My health has slowly declined over the past year. I had just passed it off as stress. But... what sparked this whole diagnosis was a bad case of vasculitis (bleeding under the skin) around both ankles while I went on vacation. Has anyone had that? Not sure if its connected? I have all the symptoms of PA including neuropathy (numbness) in my right hand and slightly in my toes. I also have anxiety, depression, insomnia, head aches, & fatigue. I have had severe leg aches since I was a teenager (doctors always told me they were growing pains). I have not been able to start B-12 injections due to the battery of tests and switching to a specialist. I have never been so fatigued, in pain and apathetic in my LIFE! Physicians and medical professionals I know are stumped at the fact that a young person like me has P.A. I would really like hearing from other young people who have P.A. and your experiences. I can't wait to get started on my B-12 so I can get back to my happy go lucky self! Thanks for your help! I will try to help others if I can. I enjoy the board! Angel

: : : I angel I was diagosised at 45, I am now 48. I had thyroid disease and vitiligo, for 20 years. My only indication of this was the tongue blisters etc, and sore mouth that no one could diagnose. My serum level was 70, and I had numbness and tingling in my legs. It took a while for me to feel better, but, my serum b-12 levels are now over 500. I take a product called nascobal a nasal gel. I still find depression and anxiety a problem that I can't seem to be rid of. I did have the stomach endoscopy to make sure things were ok there. I wish you the best.. its hard to have something like this at your age. Make sure you are screened for other autoimmune diseases.

: : Thanks for your reply, and in fact I was screened for other problems. I returned to the specialist last week. He also diagnosed me with Fibromyalgia. I have since had my first 2 B-12 shots and I am noticing some relief in the neuropathy (numbness & tingling) in hands and feet. The doctor has put me on a very low dose of Elavil to help improve my insomnia and Fibromyalgia. I am trying to keep my head above water and hope things will improve soon. Thanks for your vote of confidence! I am hoping other young people with P.A. (pernicious anemia) will come forward with their stories! I do know about Nascobal and asked my physician about trying it. Surprisingly he was not familiar with it. Thanks, Angel
Hi Angel
I apparently didn't get thru to you last night as my post is not showing. I have been dealing with PA and it's effects for over 5 yrs now, I was in my early 40's before I was diagnosed but symptomatic for almost 7 yrs in which Drs attributed to stress and the fact I was too young to have PA. One neurologist didn't even bother to read the MRI radiologist report back in 95, she just sent me home thinking it was stress. The report said they were concerned about MS, severe myelinating disease need further testing and she didnt'. When I started to have speech and balance problems at work(they thought I was drinking on the job, I don't even drink)and the fact I couldn't concentrate or follow a conversation and was having paranoid thoughts (which I don't anymore and haven't since I started the injections)is when I went to see another neuro. My biggest complaint was neck and head pain which was permanently damaged due to the neuropathy. The part that bothers me the most is that I've been at this job over 20yrs and up til about 8 yrs ago I was the one everyone came to for help or problem solving. As I started to deteriate it became a joke in a funny way that people stopped coming to me becasue I couldn't answere the normal routine questions and after awhile I would laugh right with them about some of the things I did, we joked about my getting old faster than the speed of light etc and I was 42.After a few years it started to become apparent to me I was having a problem getting the right words out of my mouth and getting electrical charges down my spine and finally my supervisor insisted I see a Dr or else. I have regained most of my motor skills back but haven't gained the confidence of my co-workers again. I still have severe pain in the neck shoulders and head for which I am goin in for a cervical spec tomorrow. I'm one of the few where it is difficult to keep my b-12 level up for any length of time, my Grandmother died as a result from this disease, where it was still in it's infancy for diagnosis back in 52, she was only 46. By the time they figured out her problem she had no b-12 level at all with a complete immune system shutdown and they couldn't get the injections to raise it, I read her medical reports while doing our geneology. But in this day and age we have treatment options to at least keep us above water and good diagnostic tools to find it faster unless of course you have a Dr who doesn't give a hoot like I did at first. But now I have a good neuro who really takes great care of me. Now it is just a matter of staying on top of it. NancyH

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