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Sarcoidosis

Posted , 5 users are following.

Trev1264
Trev1264

Has anyone heard of Sarcoidosis, I think if you do suffer from Fibro it is worth getting checked for this, if you read up about Sarcoidosis you will understand why I have said get checked, it's more for your own peice of mind.

2 likes, 19 replies

19 Replies

  • Bee70
    Bee70 Trev1264

    Posted

    Hi Trev

    Thanks, not heard of it, but will look into it. wink x

  • PiliPalaB4ch
    PiliPalaB4ch Trev1264

    Posted

    ThAt is really interesting Trev. My mother was one of the first people to be diagnosed with Sarcoidosis! My brother has also had it! I think I probably need to investigate this further, thank you confused
  • kaz_40
    kaz_40 Trev1264

    Posted

    Hi Trev1264 Ni I have not heard of it. But will certainly look it up take care
  • loxie
    loxie Trev1264

    Posted

    Very interesting Trev.  Thanks for the heads up.  
  • deb97936
    deb97936 Trev1264

    Posted

    This is a very interesting topic...   I have shown the doctor very very red roundish areas on my legs which are not normal to anything general..    They are sore if scratched, they sting on their own at times and they have a underskin tiny lump directly underneath.   The doctor looked and said he's never seen anything like it before.  I have a number on my lower right leg and the very beginning of some appearing on my left.  They are slow to show but voila, there they are!   He did a blood test to check for any like diabete's, fluid retention etc and the usual levels of everything.... all is normal except for a small decline in white blood cells which is rather normal for me.   I have suffered with CNS or agreed Fibro after a serious MVA years ago, which I have never fully recovered from.  The pain issues etc 'full body' still exist since the accident.  I later and still do have swelling issues as well when things are bad.  The Red sore skin with lumps underneath only began to appear approx 2.5 - 3 years ago, after I got a huge purple rash under the skin on my right leg.  It's partially still there but the Red things appeared a few months later.  I thought it was to do with shaving my legs and using a pumas on my skin??   I have no ideas, and nor does the doctor YET he has never suggested sending me to a specialist....  He's just useless...used to be a really good doctor and alert to things, now he just doesn't give a hoot.  Loads of folk/patients are complaining behind his back.  
  • deb97936
    deb97936 Trev1264

    Posted

    My Right leg...  not a very good photo.. but no sure what kb's or mb photo's this can handle loading.

    These are really sore to touch, no flakey skin, just red, shiny skin with a nodule lump under the skin..can't see it, only feel it.  Right leg has a good number, looks ugly. And left leg has the beginnings of some appearing.  From start to this stage has been about 5 - 7 months..

    • loxie
      loxie deb97936

      Posted

      Hi deb, if you havent already, do suggest sarcoidosis to your doctor.  I sympathise about how disinterested he's become - my group practice has changed dramatically over the past few years. Doctors don't listen, most dont even look at you while typing into their screen and printing off a prescription before you've even finished speaking.  It's a factory environment and they all look and act differently now, wearied and inured to our real needs, just ticking boxes to get through the day's procedures.
    • kaz_40
      kaz_40 loxie

      Posted

      never more  a truer word spoken loxie. they dont have the time now adays they certainly dont seem to care or be bothered where we are concerned.
    • loxie
      loxie deb97936

      Posted

      Hi Deb.  I've just been looking into some info on diabetes for a friend and she mentioned diabetic dermopathy - it's also called shin spots, and is a  skin condition which develops as a result of changes to the blood vessels that supply the skin. It appears as a shiny round or oval lesion of thin skin over the front lower parts of the lower legs. The patches do not hurt, although rarely they can be itchy or cause burning.  The photos she showed me looked a little like your legs but shinier.  Do you have any problems related to diabetes?  If not, then it probably isn't anything to do with dermopathy but I thought I'd mention it just in case.  Apparently no medical treatment is need for it, just obviously the management of the diabetes.
  • deb97936
    deb97936 Trev1264

    Posted

    Agree with you Kaz, written words of truth Loxie,
  • deb97936
    deb97936 Trev1264

    Posted

    Hello Loxie... thank you for thinking of me, that's so kind.   One thing the doctor did do as he had never seen skin issues like it before... (so he says)  I wonder if it's just a lazy thing on their part, or a way to buff one off to not have to make a referral??  Government budgets....  referring anybody into the public system now is really dam hard to get done, unless your a very serious serious case or an Age thing... tsk tsk... Any way I was thankful that the doctor did do bloods and he checked for diabetes, fluid retention etc...  the whole nine yards.  I have never had an issue with diabetes, always been a healthy person really with balanced levels, with the exception of Iron.  I do have an issue and always have with lacking iron but that has been no biggy.  I know when my iron levels are down and take measures to increase it with taking Ferious Phosphate tablets.  Of course pain issues do make the body stress alot more than normal so it effects the B groups and Iron levels..  so I take care of myself that way. 

    Thankfully it's nothing to do with Diabete's...   Cheers and thanks again Loxie, I do really appreciate thinking of me..  :-)

    • loxie
      loxie deb97936

      Posted

      Hi Deb, so very glad to hear you dont have diabetes issues, I know from friends/relatives that its not nice and causes such a range of problems.  I have skin problems which the doctors cant determine a cause for.  My skin just splits open at times, like a paper cut and then bleeds profusely for a short while before healing over.  Or alternatively a small lesion appears, something like an insect bite or tiny burn and scabs over, if it's knocked etc it bleeds a lot but heals over fast.  They dont get infected or even stay unhealed like an ulcer etc but they do scar and I now look like I've had a fight in a briar patch.  The dermotologist at the GP surgery just shrugged and said 'I havent got a miracle cure' - ie she had no answers.  I'm convinced its connected to the fibro - my immune system is obviously way out of balance but trying to get the flippin doctors to pay attention and connect cause and effect is like swimming up the side of niagara falls!  I need a lottery win and be able to pay for private medical care, at least they listen.
    • kaz_40
      kaz_40 loxie

      Posted

      Hi Loxie I saw a private heart specialist a couple of years back she treated me no better and no differently than if I hadnt paid private total waste of £150 for 45 mins never again.x gentle hugs 
    • deb97936
      deb97936 loxie

      Posted

      Gosh loxie that sounds awful for you...  thankfully your not ulcerating, which is something that I fear with my legs as time goes on...tsk...  

      Your in the same position as myself, with your dermotologist and my GP being so 'non chalant, and having a don't give a toss and don't care to actually referr you on to maybe someone more qualified to investigate..!

    • deb97936
      deb97936 kaz_40

      Posted

      Hi Kaz..  so sorry to hear of your wasted appointment..  Makes one wonder if they are bored with their profession, makes me want to personally put the question to them face to face...   

       

    • loxie
      loxie kaz_40

      Posted

      Hi Kaz.  It's so disheartening isn't it?  You'd think that because we are paying them for their time, at a high rate, they'd be more 'customer focused'.  I appreciate that medical science isn't able to produce miracles but the frustration levels are so great when you can't even get doctors to delve a bit deeper or more importantly to actually listen to a patient who knows their own body better than anyone.  I'm a so heartily sick of disinterest - I can accept a 'dont know' if that's truly the case but we have no idea if the don't know is just 'cant be bothered to look further' or is really that no knowledge is available.  Doctors, both hospital and GPs are getting worse and worse at bedside manner - ie communicating to the patient.  It's all very well and good them having many years of medical training and knowledge but if they cant be civil or answer simple questions then that copious knowledge is of nil help to our medical conditions.
    • kaz_40
      kaz_40 loxie

      Posted

      Hi Loxie I think alot of it now adays is they dont have the time especially gps and some cant be bothered either. gps dont seem to have the knowledge where fibro is concerned but you would think they would try and find out for our sakes. As for bed side manner their was none of that last year when I was admitted with a suspect heartattack. I was suppose to have ablood test that didnt happen all I got was moans from staff that they were short of beds. so I said right you can have mine. That was it I went home.so sick of the lack of care compassion and the flaming moaning.I would never pay private agin not after she was with me the heart specialist looked down her nose at me like she trodden in a piece of s..t.ooooh makes me so angry.Blood pressure riseing better calm downlol take care gentle hugs xx
    • kaz_40
      kaz_40 deb97936

      Posted

      Hi Deb truth is some of them are quiet happy to take your money? but arnt bothered about your treatment and trying to sort you out. their is alack of care compassion understanding and not very good communication between patient drs specialists. Paying private didnt get me better treated or cared for just much lighter in the pocket gentle hugs x
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