Discussions By Condition: Medical Stories

Feel like im getting nowhere.

Posted In: Medical Stories 1 Replies
  • Posted By: Maidai
  • March 3, 2008
  • 07:04 PM

Hello im a new member and cannot tell you the relief at finding this board. First off it will make more sense if I tell you about my 13 year old sons history to start and how it relates to what I feel could be mine. From the day my son was born he was never well, this progressed to 5 bouts of different meningitis, one bout of septic arthritis and numerous infections he just didnt seem able to fight. Things like chicken pox placed him in hospital for around 6 weeks with continued high temperatures they couldnt contol im talking 104 and fitting. After six weeks the spots finally broke out and we realised then it was chicken pox. Nobody seemed to care and I felt besides myself, we spent more time in hospital than out but all his bloods after illness came back normal. Finally after the 5th bout of meningitis we got lucky! The Dr treating him had actually studied under one of the countries top clinical immunologists and referred us to him. After extensive tests he was found to have a primary immune deficienty compliment immune deficieny. Your immunities are meant to be made up of 9 components that work like dominos, Jack had compliment 2 missing so his body wasnt able to stop illness. Its genetic although they have never tested either myself or his Father and he has profolactic antibiotics daily.

Im 34 and for as long as I can remember now ive never felt 100 per cent well. Im repeatedly at the Drs tired, lethargic, general aches and pains, virus after virus after virus, pins and needles, confusion, numbness. I got to a stage where if I had been asked if I was depressed once more I might have gone mad!!! Last year I was finally diagnosed with pernicious anemia and had 2 weeks with B12 shots x 3. After that they put me to 3monthly. The 2 weeks of lots of B12 I felt great but after I moved to 3 montly ive felt lousy again. I finally went to the Drs and literally collapsed in a sobbing heap telling them that I felt like I was going mad I was so tired, my sleep pattern is erratic, most nights I dont feel like I get into a deep sleep till 6-7am and that is meaning im finding im spending 12 hours in bed. They re checked my levels and they came back at 335. The Dr moved my shots to 2mnthly last week. Today I went to get my shot and was discussing it with the nurse saying that I felt like a moaning hypocondriac, that im forever tired, ive aches and pains everywhere and that I feel im annoying those close to me with my constant weakness and fatigue. She looked through my level checks and was concerned that my levels on diagnosis were actually 340 a year ago and have dropped at one point to 320 but never higher than 340 even with regular B12. She has told me to go back and push my Dr into listening. To explain that my son has a severe immune problem that is genetic and common sense means its possibly come from me. Thus far the Drs have kept saying that everything else is okay with my bloods so there cant be more of a problem, but that is what they said about my son for 7 years until we got lucky with a good paediatric Dr.

What I cant understand is how if ive been receiving B12 for a year my levels have still dropped? I thought the whole point of having B12 injections was to push it up because my body isnt absorbing it through food.

Sorry for off loading but I really did need to get it all down somewhere and maybe it might help to just print this off and give it to the Dr when I go back next week.

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  • Hi Maidai Please go to the following thread - Tell us your medical story > Vitamin B12 deficiency is commonly misdiagnosed. This thread was started by Sally Pacholok, ER RN, who wrote a book along with her husband who is also a doctor. The book is called "Could It Be B12? An Epidemic of Misdiagnoses". This thread has lots of info which I think may help you greatly. Sylvs
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