I've just been diagnosed with Pernicious anemia and vitamin d deficiency still waiting on more tests for lupus

Hi there, I've just been diagnosed with Pernicious Anemia and Vit D deficiency also low iron, I'm still wating on more test results and appointment for immunology, I was previously diagnosed with M.E & Fibromyalgia, I feel awful as per usual but feel I'm finally getting somewhere after taking a classic lupus butterfly rash on my face and rushing to the doctors 2 day's later in a full panic attack, not pretty ! Once the doctor had calmed me down I let rip telling him I'd had enough of my health problems and that something needs to be done, I said look at my face, the weight i've lost & then pulling my trousers down to show him the muscle wastage at my hip & buttock & saying to him I'm 44 next week have been out the house 5 times in the last 2 years as I'm so embarrassed by the hair loss, loss of balance, staggering, slurred speach, words coming out entirely wrong, numb hands & feet, odema in my feet, ankles and calfs, not to mention the constant pain and feeling faint, I could go on with symptoms but basically I told him my life has been turned upside down for years & I know there's something wrong & the medical profession is missing it, I said look at my history, heart & liver problems with everything else above, that's when he took note & I'm being treated for pernicious anaemia & Vitamin D deficiency. Now I feel like I might actually be getting somewhere after all this time, Sorry about the long post but I'm wanting to know if anyone that has Lupus has had any of these symptoms, diagnosis ? I haven't mentioned all my symptoms as this post would end up like a badly written novel as I'm dyslexic so my grammar isn't the best, thanks in advance.

12 Replies

oldestnewest
  • Hi Jacqui

    You're obviously feeling awful - to be housebound for 2 years is absolutely not ok and you are right to push for further investigation. ME and Fibro are such useful diagnoses to hand out as they are hard to disprove and generally encompass every symptom under the sun plus a few more!

    I have Vit D deficiency and I have read that it can cause lots of lupus-like symptoms so hopefully things will become clearer as the levels come up. I have just been diagnosed with PA too and am finding it very much harder to deal with than my usual iron deficiency anemia. I imagine you will start injections soon and these may also narrow the list of symptoms.

    It's very difficult to diagnose lupus and it can take a long time so be prepared. There are also many other auto-immune diseases that could be causing your symptoms so it really is a case of chasing the Medical Professionals until you get answers. Not knowing is definitely the hardest part. I have lupus/UCTD as I have lupus like clinical presentation but lack the definitive antibodies. This also means that my version of the disease can wander off track and do its own thing at will. We're all different.

    Hope the Vit D and B12 help you feel a bit better and best of luck with your tests and immunology. Keep us posted. Clare x

  • You kick ass! The mouse roars! Seriously, I hope you get somewhere. You are right - housebound at 44 is no life. We are supposedly in our prime. Pernicious anaemia is autoimmune and I really think once you have one AI disease you are more likely to develop others. Getting on the right treatment helps. I thought you wrote really well and expressed yourself clearly (trying not to sound like teacher feedback). Here's to you getting on the right path for diagnosis.

  • Don't have lupus have fentanyl induced hyperalgesia + but can see a lot of similar problems and am now medically unexplainable ..

    I think it is hard in this culture of labelling to stand back you know things are not right cause it is your body and I'm trying to think what may be helpful so here goes

    Vitamins obviously in an absorbable format may not be available on prescription but u could order them on line .

    Protein powder this will help muscles I use sun warrior natural it is low on calls but so high in amino etc and you can feel the difference have it with banana and skimmed milk liquidised

    Drink water warm is best for the digestion maybe with lemon wedge the combination of fluid + potassium from banana may help fluid to start going down

    Floradix iron drink it's natural and really good iron and it will not have the effect iron tablets you can raise dosage because of pernicious anaemia ,I had that years ago and was constantly struggling because of endometriosis bleeding almost constantly being anaemic and it helped no end with it.

    can u do any static exercise I know you might think this is far fetched and you would start with a couple of mins perhaps 3 times daily.static bike with handles a rower but it would help muscles water retention seratonin levels .

    Massage acupressure you could do that around joints and keep warm so ther are no cold spots left that really causes my fluid to build up.

    I had to teach myself to walk again and still struggle especially when in fatigue balance is especially bad at that point as well as doing everything else even keeping saliva in mouth recquires muscles and neuro control and my body was so dependent on fentanyl .

    As for my hair it had to be shaved off 3 times much easier .

    I do know what is like not to go out ,and you are down .and there are reasons why .

    Can you arrange anything with someone I saw best friend see me two weeks ago after shutting her out for two years ,it took so long to start to come to terms with what has and is still happening and the change it has wrought in me as well as being able to speak and think coherently etc .

    I am angry and determined and you should be too your life is precious and the medical profession can get things very wrong but if you try and manage them so you get what you need and don't expect them to think laterally ,you do that for them a proper Chinese acupuncturist may help but you won't get that on nhs .

    Hope some of these suggestions offered will be beneficial .

    Regards

  • Omg you poor thing xxoo sounds similar to me only worse. I have spent more time at the doctors this year than my whole life but after a major worsening of my symptoms last Christmas with a 3 stone weight loss in a month, extreme fatigue, joint pain, cognitive impairment, migraines, butterfly rash among others. The doctors treat me like I'm just a moaner and a hypochondriac because my bloods are uninteresting and the inconsistency in them is due other factors, like being a heavy drinker obviously as I don't drink anything other than tea, but I must be lying cos alcoholic's do! Although they did eventually refer me to rheumatology, I think just to shut me up, that was after the 3rd blood test for hiv ( because the doctor had worked in Africa and you'd be surprised how many patients he'd seen with it over there, he didn't listen to my history and wasn't interested in the fact the only sexual partner I have ever had was my husband who I've been with since we were both 14, again one of us obviously cheated?). Rheumatology seemed positive at my first appointment felt like someone believed me at last, but 3 appointments later and I've been given the vague diagnosis of probable undifferentiated connective tissue disease without immunology, they hadn't even done bloods themselves. I have started taking pictures of anything new to show rheumatology when I go, I have also been having repeated protein in urine identified by myself and taken to the doctors to test, one doctor said if it showed in one more test he would refer me but 6 positive tests later and nothing, so I told rheumatology this week and he was surprised, probably because he hadn't turned the computer on or looked at my notes? When he did he sent me for bloods and urine analysis although finished off with it's probably just unexplained uti's so I wouldn't worry and I'll see you in 6months. Two days later I had a major flare of lupus symptoms so went to doctors and he decided just to prescribe prednisone as that was what rheumatology had previously prescribed. Feeling dreadful and having kidney pain as well but fed up being looked at like I'm lying and then being fobbed off when they discover that I know my body and what is going on better than them. Sorry for rant but just thought you might appreciate knowing you are not alone xxoo really hope you get to the bottom of it soon and get some relief from the symptoms xxoo sending lots of love xxoo

  • I can't thank all you enough for taking the time to reply, I was having another bout of insomnia last night and was in so much pain, I just needed to know I'm not going crazy although I'm surprised my doctor never committed me there and then, I did tell him I'm depressed but who wouldn't be after suffering for years and my children having to deal with a mum who used to be fit & healthy to someone who can't move at times for pain, also not being able to work and not claiming benefits, I've had 2 B12 injections so far another 4 to go then I think it's monthly for life after that, my doctor did say to me that I was right in knowing something was wrong, I'm just hoping I get the referells quick when I'm feeling so bad, again I thank everyone for replying its good to know I'm not alone but Sad that you are suffering also :( xxxx

  • I suffered years of pernicious anemia from SLE (Lupus) attacking my stomach lining - (this is where B12 is absorbed) although other autoimmune thingi's can cause it ?

    A lot of the symptoms, especially profound fatigue, bad balance, knumb hands, can all be down to just the B12 deficiency. Even feeling a bit psychologically/perceptually weird was a symptom for me.

    Just to let you know, once those injections start to kick in properly you will feel like a new woman ! Look forward to feeling so so so much better.

    For me it took 2-3 months to feel the improvement, but once I did, I felt like I had my life back.

    I really hope you can get the root cause of you're 'phenomena' properly diagnosed so your whole system can be taken care of.

    ps. Never let anybody ever tell you - you have fibromyalgia again

    ! Not ever......Don't allow it - especially now you are in the diagnostic phase. I will not froth at the mouth in too extreme a manner at this point, but that little - and as yet unsubstantiated medical concept is misused way too much - and all without medical or scientific consensus.

    It has caused years of suffering for many Lupus sufferers, including myself.

    pss. Make sure you're doctors know about the odema in your feet, ankles and calves and they are actively - 'as in right now' - looking at what is causing this.

    I am definitely not a Doctor, but have had SLE for 33 years.

    If you have any questions please feel free to ask.

    x

  • Hi Jaczuu0x! I have suffered from anemia for over 10 years now on top of a huge list of immune problems. I take a super B-complex vitamin and 2000 iu of vitamin E for years also and my anemia still persists! I was wondering if you are seeing a reumotologist or an immunologist! My brother has been after me to go see an immunologist to get some answers that no one else can seem to tell me! :(

  • Hi jacqui0x, well done on pushing your doctor for some answers. Hopefully the treatment for pernicious anaemia and vitamin D deficiency will help to alleviate some of your symptoms. Good luck with getting further answers and treatment. If you need any information about lupus and how it is diagnosed we have a free pack that you can download or request at lupusuk.org.uk/contact-us/

  • Omg Paul I've just read the information packs, Finally I'm not going Insane, everything makes sense now from having glandular fever and pericarditis to having acrophobia, pernicious anemia and even down to reactions to insect bites especially spider bites that I've been left with scarring & the list goes on, it's like reading my life. All I need is a positive lupus diagnosis and hopefully I can get my life back especially now my dad has been diagnosed with pancreatic cancer I need to be healthy. I'm still waiting on hospital referells to come in but I'm not giving up now, again I can't thank everyone enough who took the time to respond to me its good to know that kindness still exists even when people are suffering x

  • I'm glad that you found the information pack helpful. Good luck with the hospital referrals. Keep us updated with how you are getting on and let me know if you need anything.

  • Hi JacquiOx, Pernicious Anaemia is really dangerous. Your GP needs to be sure you really have this cause the treatment is through daily injections. Even then if you don't look after yourself it still could cause drama for you. I think you'll find anaemia is low iron or next to none anyway. You need to ask your doctor to explain it to in great detail so you understand. Ask questions and if your not satisfied change doctors. Sorry for all of your troubles.

    As for your other illnesses have you considered Acupuncture especially an Asian one, but make sure they are reputable.

    Hope this helps a little.

    Lori-ellen

  • Oh well a little update, I went & seen the rheumatogilist & was told by her since my doctor did a ana test & it was negative she would not bother doing another as i've been unwell for so long it should have probably shown up positive ?? So she sent me for a nuclear bone scan ? I've still not had the results & I'm still very much ill :( so fed up ! I'm now on 3 monthly injections for pernicious anaemia and take vitamin d, I can't wait 3 months for the injections I was crawling before my last injection so when I see my doctor next I'm telling him I need them every 2 months & if he doesn't agree I have 5 vials they gave me home I will inject myself. The rhuemo doctor said having fibromyalgia and M.E is like a cancer patients pain in their last days & I will need to try & accept my diagnosis well sorry if I want to be healthy & nobody can help, currently dealing with pain, wasted muscles, bloodshot eyes & swollen eyelids & blood in my urine, sores up my nose & that's just today 👎 tomorrow I start my dental treatment to try & repair my damaged teeth. Does anyone know what the purpose of a nuclear bone scan was for ? Thanks x

You may also like...