Sarcoidosis - not enough care and attention given to sufferers

Hi all,

I had my chest x-ray and blood tests today, but looks like a week until i get any answers from those.

Even though i haven't been diagnosed with Sarcoidosis i thought i would list symptoms i have had past 3 years that could be involved

March 2010- Diagnosed with Idiopathic intra-cranial hypertention

July 2010- severely low white blood count, around this time i started with joint pain and between july and october massive weight loss due to lack of appetite and generally feeling unwell, ending up in the hospital severely dehyrated and vitamin deficiency's- No cause ever found

Joint pain in hips, knees and lower back have continued to this day.

About a month ago started with fatigue and low energy, then pain in shoulder and around my chest, Night Sweats and frequent waking, loss of appetite. Then start severe headaches, erythemea nodosum, swollen lymph glands in face and neck dry eyes and sensitivity to the sun. Only recently can i remember beeing out of breath when walking up the stairs at work, when i hadn't done before but i'm a smoker so that is something i didn't think to much about.

That is all i can think of right now but will post again if i think of any more.

Again thankyou all for this wonderful support, it's so helpful to have a place to talk about such things.

Best wishes

Izzy

Oh and with the erythema nodusum came extremely painful ankles and wrists

Hi Izzy, glad to hear that you have finally had your chest X-ray & blood tests. Where have you got to go to get your results, have you got a date to get them?

Hey All,

Thank you all for your kind support, I felt really positive today because of that. Then I read back my message from yesterday and looks like I had my "dyslexic fingers" on again. So weird how I sometimes just loose the ability to spell.. However, physically did not feel that good, I have got an itch all over my body, sore eyes, sore ribs just under my chest, sore chest, feel sick and really tired and for the 1st time ever I have got couple sore lumps at the back of my head.. its almost like I have had my hair pulled back too tight, but I haven't- my hair has been down for 3 days now.. Had an appointment today with lung specialist, she sent me for another Xray, although I had a CT scan end of May, also another set of breathing tests, which I also had just over a week ago. After the tests (she got the results immediately in the envelope from respective departments and was able to view the xray in the system). She then advised me that I most definitely have got Sarcoidosis. As nodules etc are slightly down and CT Scan looked a lot better she decided to hold off the Steroids just now.. but will write to my GP to get me steroid inhaler, when I am having difficulties or inability to breathe, this should give instant relief. My soft lung tissue has still alot of shadowing and swelling, the tubes and bits of lung tissue they took some samples during my biopsy also show Sarcoid. So finally I have got my diagnosis! Releaved.. Will have all new tests in 2-3 months and will meet both consultants (Rheuma and Lung) in October. ..

Hope you all and me too this "Sarkie" will soon into remission so that we can enjoy our lives again! Izzy, me too, I first noticed when taking stairs that I was so out of breath (not smoked for few years now tho) and it just kept getting worse, even stairs in my house are hard to manage, but I just keep walking a bit every day hoping that it will help. I have been looking at the diet options online, and carbs are not good, there is a big list but cutting out sat fat, pasta, rice, bread, sugar, cakes,cookies, chemicals (home cook as much as possible), fizzy drinks (even sugar free ones) etc should help the well being. I only lost weight for a little while, almost stone in a month but it is back up now ( I am 12 stone- should really be 10-10.5 according to 5ft 4 h). Must be because I just want sugar-sugar-sugar and coffee to stay awake, big meals although are out of question, do not want other fatty foods but suddenly my body needs a lot of sugar, which is not good for us "Sarkies" either.. I will go abroad end of July and might be looking out some alternative meds. If it works, great, if not I am not going to feel bad about it.

All the best to you all and I am so glad that I can now share how I feel with only people who really understand me! Thank you to all of you it has given me some hope back xxx

Love, M

Hi Linda,

My blood tests should be back in a couple of days but my chest xray results won't be sent to my for a week so i will probably make an appointment with my GP next tuesday and get all the information at once.

And M, i am glad that you finally have your diagnosis, even thought Sarcoidosis is horrid at least you know for sure what you are dealing with and hopefully get the appropriate treatment. My worry is that all my tests will be inconclusive and again put down to something they cannot explain, but i know that one day i will find a resolve.

Izzy

HI MM, SUCH GREAT RELEIF TO HEAR YOU HAVE NOW BEEN FINALLY DIAGNOSED WITH A CONDITION, LETS HOPE THAT NOW YOU CAN BE TREATED AND ALL THOSE NASTY SYMPTONS WILL EASE.!

HI IZZY,

YES MAKES SENSE TO WAIT AND GET ALL RESULTS AT THE SAME TIME'

I CAN RELATE EXACTLY TO HOW YOU ARE FEELING, AS THAT IS WHAT I FEEL AFTER ALMOST EVERY APPOINTMENT....I KEPT SAYING I FEELING A FAKE.

BUT WE ALL KNOW OUR OWN BODY AND WE ALL KNOW IT IS NOT RIGHT.

ALTHOUGH I THINK NOW AFTER 8 MONTHS I HAVE HAD ALL THE WORSE SYMPTONS AND FEEL THAT IT MAY OF BURNT ITSELF OUT....INCLUDING ME.

SO BY THE TIME I SEE THE 2 DOCTORS ON 26TH THEY WILL SAY.....WELLL WE CANT FIND ANYTHING.....WATCH THIS SPACE!

Hi Izzy and Linda,

Mine took 9 months, it has been a long and painful wait. Seems to be this way. Every time I though I have got an answer and hopefully meds that will help me, something else changed. I have lost count how many different tests I have had.. The problem is that most Sarcoid sufferers have got more than one issue, like you all know very well and there is usually more than one doctor/ consultant working with you and they don't alwayscommunicate or work together that well, information takes time to get passed on between them etc. It took my Aunt over 2 years before she was diagnosed, Sarcoidosis had gone into remission for few months and returned again . 1st she was treated for kidney infection because of fatigue and red raw swollen ankles.. Hopefully you all are getting some answers (correct ones) very soon!

Good luck xxx

Hello everyone, been very quiet on here lately, hopefully that is a good thing and not sufferring.

Well I thought yesterday was DDay but alas no. Although they have been treating me with preventative medication for TB for past 2 months they are saying there does not seem to be any real traces of it....as ive been saying all along. They have stepped down my medication to just 2 tablets a day originally was 14 a day. I am finally seeing a Sarcoid doctor on 11th July...as this has been my own 'prognosis' all along.

SO watch this space!!!!!

Hi Linda

It's funny that, I just though the same and logged in to check. Good luck on the 11th, hope you are getting answers or at least correct tests. I am going back mid September for more tests to see if there are any improvements. Yesterday met with my GP and got 2 inhalers prescribed, one for daily use and another when I need it for breathing. So hopefully onwards and upwards from there! I do feel quite a bit better after my diagnosis but the same tiredness.. no energy or motivation and my head still is playing tricks on me (no memory or common sense).

All the best to you all x

MM

Hi MM,

hopefully we have triggered some chats now!

It is ironic I actually feel back to 90% normal,. but do get very tired by the end of the day, but that maybe because I am doing so much again.

By the time I het to see the Sarcoid doctor they will probabaly look at me and sau 'nothing wrong with you'

I truly feel that this episode has run its course and burnt itself out now

June I do hope you are keeping ok.

Hi Linda,

Really hope that it has run its course for you. I think Sarcoid doctor should still be able to relate to your previous symptoms. Agree, hope June and the rest of the girls are all OK

Hi MM,

I was a little concerned that by the time I finally get to see the Sarcoidosis doctor that I would be 'kind of!' Back to almost normal health at that period of time. So I did mention it to the TB doctor yesterday and he assured me that my scans and biopsies are the living proof that I have several abnormalities and that she is already aware of my case history.

So it will be interesting to see what she has to say and whether it is felt I need to start a new medication!!!

Hopefully the other girls will look in soon.

Take care x

Just been reading all these posts as I'm currently waiting for confirmation of a diagnosis; bizarrely in my case the renal specialist is the one who's been getting the ball rolling and started to think about sarcoidosis as a possibility. I've had a few blood tests indicating a slight impairment in kidney function that kind of fluctuates but never quite gets as far as normal, a couple of high serum calcium readings, inconclusive PTH and perfectly normal ACE level. All that was got from blood tests he did last Thursday - after which he sent me for chest and abdominal x rays straight away!

Got a letter from him on Saturday outlining his thoughts, results of blood tests and x rays. Chest x ray seems to indicate sarcoid but not with nephrocalcinosis.

Saw my GP on Monday and I have to say I'm lucky - mine seems pretty clued up and very supportive! He directed me to this site as well as going over the basics of the condition and how it affects different people.And the likely next types of test.

Then on Tuesday evening - hope you're all well supported for this - got a phone call from the renal consultant!!! Making sure his letter was clear enough to me, telling me he thinks the next move is CT and a referral to resp clinic. He's sending off paperwork for the CT rather than waiting for a respiratory person to do it.

In some ways I guess I'm lucky as the symptoms seem pretty minor compared to what you're all describing. I have a bit of a cough at times, but nothing major; I was putting it down to a combination of hayfever and being on an ACE inhibitor (which as now been stopped) which has cough as its most common side effect. Get a bit breathless at times but again consistent with my general hayfever symptoms. And weird kidney test results but no symptoms in that area that I'm aware of. Hasn't stopped me getting a bit freaked out at times and imagining all sorts of scary scenarios over the last few days mind you! Feel like a bit of a fraud getting upset about it when I can see compared to you guys I really am well off. :-(

Morag

By the way I have qualifications in microbiology and pharmacology both so if anyone has questions about drugs and bugs I might be able to help.

Hi Morag and welcome.

This site seems to be very quiet latley, but hopefully this is a reflection due to all our health problems being at bay as such.

I will post another later as I got a breakthrough yesterday.

Take care