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Anyone on here on facebook that has sarcoidosis, I'd be interested to speak with someone as for some reason this website is a nightmare to reply and post on for me, Im in Melbourne Australia Janie Herbie Cubranic and would love to hear from anyone who is battling this crappy disease without much knowledge and actual confirmation, I had a lung biopsy around 5 weeks ago and no confirmation but 2 weeks later got severly sick and ended up in hospital last week with lung infection and minor partial lobe collapse, anyway if anyone is as frustrated as me with all of this please friend request, might just keep me out of the loony bin.

Thanks Janie!! (Herbie)

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  • Posted

    Hi Janie,

    It sounds to me that your infection was possibly caused by those that did the biopsy, and was not due to the sarcoidosis' itself.

    How did they determine you had sarc?

    were you having symptoms prior to the diagnosis? If so, what kind?

    did the docs diagnose you, immediately, because, in my case, and as I've heard from others, the doc's hem and haw for months and months before they utter the word, sarcoidosis.

    they usually start off with the words, 'sarcoidosis like symptoms'

    or 'granulamatis (sp)

    Are you seeing a pulmonary specialist?

    in any case, if you can, see another pulmonologist for a second opinion.

    i hope you are feeling better, and I'm sorry you had to go through this.

    By the way, I don't believe we are on Facebook, at least, I hope not.

    Barb

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    • Posted

      Hi Barb

      Yes you are right, the hospital did confirm the biopsy most likley caused my infection ect, I have had lots of symptoms for around 6 yrs now, had adult chickenpox in 2009 which caused encephalitis and viral pneumonia and nearly killed me, was all throughout my lungs and in the brain, I recently had a ct scan for chest pain and high heart rate which then discovered granumlomas and inflamed lymph nodes some of which had changed so had a review scan and was sent to a lung specialist who confirmed sarc, the biopsy was inconclusive and he said this is often the case, I have also been getting skin lesions mainly on chest and arms, two diff sorts, some are like burn marks and the others are like pimples but not, so just had one of these biopsied as well, my lung spec says the burn like marks are typical of sarc but others on here say they are not, also have chronic migraines, sore joints, fatigue, pins and needles, night sweats and generally feel unwell most of the time, Its been a rollercoaster of specialists mainly neurologists as the migraines i suffered were debilitating, have also see rhumotologists looking for answers, my neurologist basically blew me off as having scarring on the brain from migraines but i wonder now if its neuro as well...thanks for the reply I was looking for a few facebook friends as its interesting to hear other peoples stories who actually suffer from this crappy disease, steroids seem to cause havoc with most but there dosen't seem to be any other treatment, thanks for your reply, not sure where your located but there seems to be limited information in Australia and Im keen to find out as much as I can, take care.

      Thanks

      Janie

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  • Posted

    Hi, I've battled this disease since 1998 and would be happy be chat with you via Facebook. I'm Debie Eakle Brethauer on FB, feel free to reach out to me.

    Take care,

    Debie

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  • Posted

    Hi Janie,

    I'm so sorry that you are going through so much.

    It's so frightening when you can't get either feedback, or support from yourdoc's, but I have learned, at least here, in the U.S,, that their understanding of sarc, is very limited.

    I am also surprised at the lack of members, andsupport on this site.

    Thanks, to Debie, for volunteering.

    i wish I could put my two cents in, but I too, lack knowledge about sarcoidosis.

    i've had lymphoma, since 1996 and finally succumbed to chemo, because the orthopedic oncologist said I had lymphoma in the bone, that soon, my legs would fail me, and I would be in a wheelchair the rest of my life, if I didn't have chemo right away.

    a year later, when they decided I had failed chemo, and wanted to do a bone  marrow transplant, I said no, and told them to test the bumps in my leg and do a bronchoscopy.

    Hence, the eventual diagnosis of Sarcoidosis, which the doctors thought was lymphoma.

    i probably didn't need chemo.

    the docs believe a component of the chemo. Brought the immune system down. As a result, I have several autoimmune diseases, including polymyalgia Romatica, which is playing havoc with my body.

    luckily, there is a wonderful  support site, where I've learned so much about dealing with PMR, because doctors here, truly know little.

    hopefully, you will get the answers to your questions, and hopefully, things will get better soon, for you.

    Barb

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    • Posted

      Hi again Barb,

      That sounds terrible, thats the thing these days, doctors don't seem to know enough, my GP mentioned that Polymalgia thing but said im way to young, I don't think there is nearly enough known about Auto Immune diseases and in particular Lyme disease is also another one here that doctors don't have much time for or think exists in Australia, just so frustrating its worse not knowing than knowing so hopefully the arm biopsy will confirm it, the favourite thing they like or did like to tell me I had was fibromyalgia, a rhumotologist said to me its a load of rubbish, doctors only tell you that when they can't find what the problem is, everyone one was so focused on my head my lungs were never looked into until I had chest pain and high heart rate, hope you are feeling better as well and thanks for responding.

      Janie..smile

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  • Posted

    Hi Janie

    I live in NSW Lake Macquarie between Sydney and Newcastle, Australia.

    Yes, it is very hard to get the medical world intereseted in treating sarcoid.

    All the doctors have heard about it but most dont know how to treat it and it is too rare for them to spend the time researcing it.

    Some of your issues sound like sarcoid but some I can not relate to.

    Typical sarcoid issues include fatigue, painful joints knees and hips in my case, chest pains and night sweats.

    I have had the condition for over 30 years now. Thats not a misprint I said 30 years. I am not on FB but I am happy to communicate with you through this site or any other means that you might wish.

    Sorry to hear you are in the middle of all this and hope you get results quickly from here on in.

    Regard 

    Tangles

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    • Posted

      Hi Tangles,

      Yea its like ok you have sarcoid see ya in 6 months, my story is alot more involved but would need 30 chapters to tell all, def have the chest pain and def have sore knees as well as plantar fascitis and a load more symptoms, I havent seen anyone post anything about neuro sarc and wonder if the scarring in my brain is the same as my lungs I also had terrible night sweats for about 3 yrs which i did think could be age related, i have had 2 ct scans on lungs and specialist says its typical of sarcoid i did google the skin thngs and can see similar looking things on some sites so will ge biopsy results any day now, my specialist said that biopsy which was done via bronchoscopy are often inconclusive unless they pick a piece of diseased lung which i find hard to believe but anyway I'm no doctor, sick of being on steroids, cause me loads of issues as i see they do others, anyway fingers crossed for a confirmation cause i'd rather now what im dealing with than not.  Thanks for your reply.

      Janie

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    • Posted

      Janie,

      i was just reading your response to Tangles, and it brought up thoughts o f a rather funny story about the use of biopsies of the lungs, in diagnosing sarc.

      i mentioned, previously, that the doc's at a top notch facility, in the U S, still doubted the findings of sarc, after 5 needle biopsies In the area of the lung, and 6, in the leg. They gave me the same story about inconclusiveness(is that a word?) and said they would need a biopsy that removed an entire node. I wonder why they bother giving needle biopsies in the first place.

      we set it up for  months later, because we were going to be away for one month, and I was in no rush to go through a more intense type of surgical procedure.( We are justGuinea pigs, after all.)

       

      Prior to the trip, I hurt my back, and a rheumatologist, gave me a fairly hefty dose of cortisone, around the hip area, so I would feel more omfortable on the trip.

      i felt great! The trip was great!

      When I showed up at the assigned time, for the procedure, they did a scan first, they virtually found no nodes, anywhere, and sent me home, without doing the procedure.

      That was the first time they actually uttered the word,"sarcoidosis"

      This also makes a point for the necessaryuse of prednisone, or whatever the name of the steroid, used for treatment of  Sarcoidosis.

      i've used pred. For 2 1/2 years, for PMR.

      it's a love/hate relationship (I am attempting to wean off) but necessary, to control pain and other symptoms of the disease.

      in the case of sarc, it also controls the growth and destruction of organs

      i have learned, over the years, to listen to those who have suffered, they know so much more than the specialists, rely on your own judgement. ( you know more about your own body), Don't Let them give you, unneccessary testing(which they love to do, after all, it's your body......not theirs)and when you are down,  talkto those that will understand and support you.

      we're here.

      Barb

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    • Posted

      Hi Barb,

      Yea because i had basically been fobbed off for 5 yrs a new gp said to me i want to try you on a cortisol but as i had a reaction to a few drugs in the past he put me on dexamethasone...omg, i was like europhic and every symptom i had disappeared even the constant migraines which were the most debilitating part of my life then. I was only on them for 6 weeks but had really bad side effects, lost half my hair and my whole body blew up and put on around 12 kilos in no time, they even killed a plantar wart i had in my foot and had been cut out numerous times to no avail, later on i found out these steroids are used to treat cancer patients but it did prove something was wrong and my new gp insisted it was an autoimmune disease like lupus or even ms, I was also sleeping for 4 hrs a night and like a cleaning machine until it all caught up with me, i was weaned off them in Feb this year and all symptoms returned, Im confused about the steroids, I am now on prendisolone or whatever the spelling and already packed on 3 kilos, not sleeping, eating eating  and doing all the bad things, is this normal cause both times this has happended to me, also have fluid retention again not as bad but was sposed to be on them for 6 months but am weaning off again already but will take 2 months, but then what, this is my major concern, im on host of other meds for pain, migraine, ischemic brain vessles and heart rate, its a nightmare and yes feel like a guinea pig, its so much better talking to people who know what your on about, my lung specialist is really nice unlike my aroggant nuerologist, but like you say and the end of the day they dont suffer from the actual disease and know nothing about the nightmare it causes, i also believe it def makes you depressed and anxious so its great to hear other peoples stories and advice. Acutally vision has anyone had decreased vision, mine is terrible anyway and cant afford for it to get any worse.

      Thanks again!

      Janie

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    • Posted

      Hi Janie,

      sorry, it took me so long to reply.

      i looked up Dexamethazone to find out how it differed from any other corticosteroid, and basically, it's in  the same family.

      I'm taking prednisone, ( it's the same stuff you are taking now) and I always wondered if it was the culprit in my massive loss of hair. You've answered my question.  Funny, when I asked the doc's, they say they don't know or they don't think so.

      Anyway, I was always told I had such beautiful hair, even by strangers. Another thing to suck up. And , my whole body changed, permanently, too.

      Of course, I know exactly what you are going through taking those med's .

      the constant need for food, the moon face, the weight gain, the lack of sleep(and I have trouble sleeping, anyway)......it's adding insult to injury.

      By the way, they use steroids in chemo because they help reduce inflammation.  Same thing they use it for in all these autoimmune diseases.

      Also, all of your reactions are normal and due to the use of steroids.

      i have a couple of questions, based upon some of the symptoms you've been experiencing.

      What strength of prednisolone are you taking, currently?

      How long have you been getting migraines?

      When did your eyesight start deteriorating?

      Do you have other aches, like shoulders, butt, neck,wrists, etc?

      Also, i don't understand how you can taper off the steroid's so quickly.

      From my experience, if you've still got inflammation in your body, the symptoms return within a very short time(7-14days) I have been weaning off pred for close to 2 1/2 years. It's a very slow process,and if I have inflammation, which they test for, and  are depressed, or stressed, or sick, I can get ,what they call, a flare up, and then Ihave to up the strength of the prednisone, until I don't hurt, and then start the process of tapering, again.

      Does the doc test you for inflammation?

      i'm beginning to think that you might have another autoimmune deficiency, in addition to sarcoidosis.

      Have you seen an ophthalmologist ?

      your symptoms are mimicking a condition called GCA, which I don't know a lot about, but is connected to autoimmune illness, and needs to be treated, to keep from losing eyesight.

      I'm going to stop, here, and await your response.

      i do think you would benefit, anyway, from getting on the PMR/GCA site, as it is very active, and reading some of the posts, might help.

      in reading over some of your symptoms like pain in hips, knees, fatigue, I'm thinking, it's possible your gp is right that more than one thing is going on.

      Barb

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  • Posted

    Janie

    I am no expert in sarcoid...just a long term sufferer.

    From my experience and from talking to other sufferers on this site.

    Hair loss is often mentioned by the ladies who suffer sarcoid on this site. Interesting to see it coming up again, I can not beleive this is a mear coincidence. I am a male and lost most of my hair but I have always blamed inheritance for this situation. Prehaps sarcoid/steriods played more of a part then I realised???

    Eyes become sensitive to sun light and sore.

    Steriods give alot of side effects including weight gain. increase in apertite. for me the food tasted really bad but I could not eat enough of it, strange I know. After eating my stomach was really painful. 

    Mood swings are another real side effect...be on the look out for these.

    Sleep issues are another item often raised. This is true in my case and I have developed sleep apnia and problems contected there. Sleep problems seem to be common with sarcoid/steriods.

    When I came of steriods it took over two years to reduce the dose. It is something that needs to be reduced very slowly. Coming on and off them suddeningly seems to be a concern based on my experience with the drug.

    Hope some of this may help

    Regards

    Tangles

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    • Posted

      Hi tangles

      Yea i can def vouch for losing at least if not more than half of my hair, it used to be so thick id even get it thinned out..its now down to a wispy mess and lost 3/4 of its length, handfuls would just fall out and it also stopped growing i was on a really strong cortisol tho (dexemethasone) that also caused some other really bad side effects so had to come off it no choice, i did ask diff docs ect if it was from the drug and was given conflicting answers my lung spec said its part of having the disease itself so who knows...as i was having lung biopsy he didnt want me on anything until that was done cause can mask results been pretty sick eva since with lung infection and minor deflation...ive now been on prednisolone only for a month and hair seems ok not falling out like it was but not much left to fall out i guess...sleep apnea yes.. had test but only when i dream cause i dont snore apparently...sleep insomnnia is major and has been with both drugs lucky to get 4 hrs a night but on other drugs i was like super woman and became OCD but not on these but maybe cause I still dont feel well...glad you mentioned the stomach thing have terrible pains like gnawing which is relieved slightly after eating and yea eat crap even when i dont feel like it..put 12 kilos on with last meds in 6 weeks as soon as i stopped i went on shakes for a couple of weeks just brekky lunch and dropped nearly six kilos..but after a month of being on these have gained 3 already and loads of fluid retention...its such a joy to have sarc if thats what i have..seriously hating life at the moment and its frustrating cause not alot of help here in Australia...it steals everything, even your personality im usually pretty placid but on these and other feel full on angst and fire up quite easily i dont even look the same and i still havent been confirmed as having sarc, get some arm biopsy results on monday so hoping at least that confirms it cause its a nightmare not knowing..sad

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    • Posted

      Hi Janie

      Between biopsy and lung Xrays there should be enough for diagnosis if it is sarcoid, which it really sounds like it is from all that you have said.

      Sleep loss is an issue I must agree. I use to, get like you, only a few quality hours sleep a night.

      Yes it does effect your personality, not sure wether it is the sarcoid or the steriods but you become moody less tolerant and generally less easier to live with.

      Hope tests give you a direction soon.

      Regards

      Tangles

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    • Posted

      Hi tangles

      Yea had terrible day today..woke up with massive migraine..completely numb arms from shoulder to fingertips..feel like there is a knife in my spine and face full of fluid...this i think is cause im weaning steroids, really is a nightmare and feel that care here is slack..still unwell from biopsy and not due to see lung guy for another 4 weeks...after speaking to someone with some medical knowledge he said my best bet would be to have enlarged lymphnodes biopsied via chest anyway yea feel like my life is being stolen at the moment well have for sometime and def agree the steroids change your personality and def make you feisty and moody..dont think they should be mucked around with...anyway thanks for your reply..will let you know if arm biopsy comes thru but not holding out much hope.

      Reagrds

      Janie

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