Diagnosed at 25 with pernicious anemia, early neuropathy, and necrobiosis lipoidica??

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At 21, I noticed two spots on my legs that appeared similar to ring worm. After many creams and ointments with no improvement, I finally went to a dermatologist who diagnosed me with necrobiosis lipoidica and told me once I got my diabetes under control, the spots would go away. Meanwhile the doctor kept commenting on how odd it was that I had this so young as it is only typically seen in elderly women who and is usually a key identifier for their late diabetes. Confused and upset, I went to my primary doctor to confirm that I was diabetic and begin treatment. However, the only symptoms of diabetes I experienced was extreme fatigue (in spite of all the different antidepressants my doctors had put me on for years....I was currently taking 3 kinds daily and still exhausted) and tingling/loss of sensation. I also was experiencing quite a bit of short term memory loss, but it was always said to be from my depression according to doctors. After many blood tests and doctor changes, it was concluded many times over that I was not diabetic. I was just one of the extremely rare cases of the skin disorder without diabetes and especially being so young. However, through all of this my fatigue kept getting worse and worse. Finally my doctor sent me to a neurologist thinking that perhaps I was narcoleptic. However, after nerve tests and brain scan, my neurologist that even though I was now 23, my brain scan confirmed I was not narcoleptic, but had early neuropathy. He immediately ordered blood tests that confirmed I was both deficient in D and B vitamins. My primary doctor then diagnosed me with pernicious anemia and I have been on b12 injections ever since. However, as my super rare skin disorder still progresses, spreading even with steroid injections, I find it hard to believe that as these conditions all typically occur mainly in women much older than me (20-40 years at least) that there isn't some relation, done unknown root cause not discovered by my doctors yet. Has anyone else been diagnosed with both necrobiosis lipoidica and pernicious anemia? Has anyone else ever been diagnosed so young with either? Confused and frustrated, I would greatly appreciate any insight.

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  • Posted

    Hi Chasity

    i have been reading your post and hoping someone can give you some help or info.

    have you tried posting on the Pernicious Anaemia Society web site.  There are so many knowledgeable people there who may have info that helps.

    i do hope you get the answers you are seeking.

    even if no one on this site can help you there are probably lots of us thinking about you x

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  • Posted

    Hi chasity....   I began getting the odd spots turning up on my lower shin on my right leg, then months later my left shin and also round the side of my left leg.  Nasty looking aren't they!!  After two and a half years I have finally got a Diagnosis!!   Yes, it's the same, Necrobiosis Lipoidica.  

     

    My history of Fibromyalgia began after a serious MVA (car accident) 13 years ago, suffer head and spinal trauma's.  I have never come back to 'normal' since and I've continued to suffer chronic pain etc, and head issues.  Chronic Fatigue like Chronic pain is a biggy and has taken over my life.  Stiffness of the muscles and tendons feel like I have Rigarmortis from head to toes..  Terribly painful.

    Having only just gotten my diagnosis for Fibro, and just a week ago my diagnostic for my legs..  

    I am NOT a Diabetic either!   But I do have an issue with keeping up my iron levels.  Naturally being in Pain all the time one's body will deplete in the B groups and Iron, as ones head and body is in stress all the time which eats away our B and Iron levels.

    I'm told to use a Cortisone cream, but from what I have read of other sufferers, not many have any real improvement using this sort of cream.  Was told there is a Coloidal Siver cream what may help???   hmmm  I'll try all sorts to try and stem the 'N L' from spreading.

    Take care chasity.   xx

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    • Posted

      Hi Deb,

      I tried the corticosteroid creams for over a year with minimal improvement as well. The only thing that helped the most were injections of the steroids. They burned and never changed my skin back to normal, but they did stop the growth of each spot and drastically reduced the thickness of each. Trick is to get them injected as soon as you find one. I keep getting a new spot ever so often. However if I can get my dermatologist to inject asap it keeps them small and less noticeable. Beware, I found out the hard way that some cases of the lipiodica can also be triggered by trauma. For example, on both incision sites for my c-section and a wrist surgery last year, the incisions would come back open and then once finally healed, I developed a spot. Keep in touch and best of luck! I would love to know if you try the silver cream.

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  • Posted

    Hi Chasity...  thank you for letting me know your experiences with treatment. I hope I can get to a Rheumatologist next year.  I'd love to get on top of these things before they get way out of hand...  I have a few now and more developing round my leg.  It's interesting to hear you mention of it developing in 'other regions' my goodness!!

    Will keep in touch, thankyou. 

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  • Posted

    HI I was 15 when necrobiosis started on my shins (1977). The dermotogist did a biopsy to confirm it in the early 1980's after about 5 years of it progressing to cover a larger area bilaterally on shins and a little on the ankle area. Always bilateral and as I've gotten older (53) it's on my knee area a little.

    it looks like scar tissue now but is still discolored and always noticeable to me. So what I was told is it shows up in diabetics to follow up on testing (just like you). I'm not diabetic! 

    It has been very frustrating trying to find answers and I understand how you feel. Apparently it hasn't been researched but I have found associations of other possible autoimmune illnesses; rheumatoid arthritis and SLE. I've been diagnosed with Multiple Sclerosis (1990), and have other symptoms of Lupus but never a positive ANA. 

    Win the 80's I was given trental and colchicine to see if it helped. I noticed nothing and stopped. It has faded but it's not gone. 

    Why isnt this takes about and questioned by doctors is so irritating at times so I stopped.

    im sorry someone else has so young has this with no answers.

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