mild sarcoid

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Hello all 

I was diagnosed with sarcoid in the lymph node last week. I've been run down for a year but nothing sinister. A few months ago I kept getting cellulitus in my breast and swollen under arm lymph node.  For two months they thought it could be tb but it was confirmed as sarcoid.

The tb doctor said we are chicken don't know much about this disease and we observe. Luckily my gp has referred me to hosp. My blood tests are okay. I have extreme painful tiredness lymph node. Painful arm joint and sore throat. 

I know it is prob mild and I know how lucky I am.  But in still don't understand what is going on in my body. And these symptoms especially the tiredness is causing me to feel low. 

I would be grateful for any support Thank you

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  • Posted

    Hi Kelly

    Welcome to the site. 

    I'm like you in that my sarcoid is fairly mild; in the lymph nodes in my neck and in my kidney but is currently pretty much in remission after a few months of steroids. Tends to be my calcium levels in the blood that are the main one they monitor because when it gets high thats a sure sign that the sarcoid is on its way back. 

    And oh boy, the fatigue!! There are times when I just feel done all day. 

    Its true enough, the doctors don't seem to know much about the disease. The most likely cause, they think, is that its an autoimmune disease. That's where your immune system is a bit hyper and tries to decide that parts of your body are foreign to it and attacks it. So a common treatment tends to be something that will dull down the immune reaction. A lot of the time its steroids - I was on a dose of 30 mg for about 6 months then gradually reduced. At the moment I'm on nothing but with close monitoring incase they need to start treatment again. But the respiratory consultant I see (who is the one who knows the most about sarcoid so tends to see any sarcoid patients in my area whether the lungs are involved or not), says to be honest they don't really know exactly what causes it. So annoying as it is, you aren't alone in not knowing whats going on and why. 

    What they do know is that if you have it, you tend to develop "lumps" or areas of inflammation in the sites its affecting. So in your case, the lymph nodes are probably inflamed causing the lymph node pain and also the sore throat. If you have breathing difficulties or get a blocked nose as a result of sarcoid that could also affect your throat, if you're breathing through your mouth a lot that can irritate the throat. Joint inflammation can also cause pain.

    Hopefully when you see someone at the hospital, they'll be able to help figure out exactly what is going on and what is the best treatment for you. As I said steroids are common, but so are anti-inflammatories for joint problems and immune suppressants (though I think they're left for more serious cases).

    Look after yourself  

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    • Posted

      Thank you so much for your lovely reply just makes me feel not so alone. I'm lucky and my lungs are clear. You have given me a better understanding of the disease and I know my calcium levels are okay as I had tests a while ago for para thyroid. 

      It was the not understanding that made me worry I have experienced this when I was diagnosed with mild iga nephrophy.  But I must stay positive both are auto immune but mild. 

      If my blood tests are normal is there still any chance the sarcoid could be on other organs ? 

      Wishing you well

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    • Posted

      Hi Kelly ~

      I was diagnosed with Sarcoidosis in 2005.  I had it (at that time) in my lungs and lymph nodes which was confirmed with a biopsy.  I know have it in the upper region...ie: ears, nose, eyes, mouth and yes, my teeth...it's awful.  I see a pulmonlogist, rheumatologist (due to the inflammation) and have continuing xrays, MRIs and CT scans especially of the brain.  I don't want to scare you because this isn't the norm of this disease.  Usually it only stays with you a short time and goes away for good.  However, those with a compromised immune system to the extreme is more likely to have it forever.  It's an awful disease because of what you go through.  I might suggest you ask you doctor if you can see an rheumatologist because that doctor treats the inflammation.  I was on steroids for almost two years plus methotrexate and plaquenil.  Metho is a drug they treat cancer paitents plus other medical problems. Methotrexate may treat rheumatoid arthritis by decreasing the activity of the immune system.  It's the decreasing the activity of the immune system is why the rheumatologist might be something you can check into....I had to have referrals for everything, if you don't, possibly you can just make an appointment.

      As far as you testing "normal" that means it's gone.  Sarcoidosis is in everyone.  And, sometimes people go to the doctor and are given a diagnosis of pneumonia which in fact it could be sarcoid.  They are given a zpack or antibiotic and they never even knew they were infact experiencing sarcoid.  It goes away for them.  I'm in stage 3 and yes, I'm afraid of my future.  The doctor sent me to a heart specialist and if it is still as active as it it, they are going to biopsy my heart.  Please understand this is not the norm!  You may be one of the lucky ones and dodged a bullet (so to speak).  My wish and prayers are for those whom are suffering from this that they do find some kind of a cure for those who have it severe....and mild as well! 

      I also have another auto immune disease...sjogrens..which is a disease I don't wish on anyone it attacks the eyes...so, with sjogrens and sarcoid...my eyes are a mess in fact, my left eye is so bad I am threatened with blindness in it. It is horrible awful and the symptoms are...well, I'll spare you the details what I'm going through since it's sarcoid you are concerned with.

       

      My immune system was compromised to nothing when I had surgery after surgery w/i a year...from an auto accident.  I didn't have time to build up my immune system so the sarcoid had a field day. You can compromise your immune system with little sleep.  You build your system up w/i the hours of 10pm to 2am...a four hour window.  Now if you work days, it's a different time factor.  Believe me, I've had to really help myself on this disease as the doctors are really not knowledgeable, however, more and more people are being diagnosised with it that I believe all doctors may in fact educate themselves. There is a site that supports sarcoid but you do get good info here.  I  hope I didn't scare you  because like I said, I am not the norm just because of it's spreading.  Just find out as much as you can on it and get as much sleep as you can.  I wish you luck.

      frustrated

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    • Posted

      Hi Frustrated,

      My heart goes out to you for all the suffering you have had. You certainly have had and are having a terrible time of it. I imagine it is worse for you because you already had an auto immune problem. It must be difficut to work out which symptoms belong to which disease.

      May I just correct you a little though? When you said that the testing is 'normal' therefore the Sarcoidosis is gone, this is not always true. My consultant said that not every patient tests positive. If you are in the mild range then often blood tests show nothing abnormal and it is very hard to diagnose Sarcoidosis as being the culprit so it is best not to celebrate too soon.

      I haven't seen a rhumatologist but I've seen a neurologist and a dermatologist and I am under the respiratory consultant because both lungs were in a shocking state. This consultant is amazing and knows everything there is to know about Sarcoidosis so I'm in good hands. I did find that being put on Hydroxychoroquine helped the pain in my joints a lot although as the Sarcoidosis cycles its way around my body and gets back to inflamming my joints even that drug doesn't help so much.

      I should have explained that I'm not in a wheelchair because of the Sarcoid, I'm in a wheelchair because a Registrar did not carry out an operation on both my feet the way the consultant had requested. Consequently he damaged the nerves in both my feet so I can no longer bare my weight and I'm in constant pain 24/7. Unfortunately being treated with steroids for the Sarcoid causes my feet to be even more painful because the steroids produce cortysol which coat my already damaged nerves and makes them screamingly painful.I can't really win, treat the sarcoid suffer with my feet, treat the feet, have sarcoid ravage my body. No contest really! At the moment the sarcoid is affecting my vision a bit. Lots of floaters in the eye although I don't know if that is anything to do with Sarcoidosis really. I have a cyct on the inner corner of my right eye and the optician said I had extremely dry eyes and then told me it was my age! Cheeky woman I was only 57 at that time! Anyway I have to use artificial tears to keep my dry eyes wet. The eye problem came up at the same time my sarcoid hit but again I don't know if it was just coincidence or there is some connection. I also had alternating dry mouth and another day the saliva would be pouring out of my mouth. Thats more or less gone although I still get dry mouth (probably due to medication). I keep getting nose bleeds too but after a couple of weeks it stops and something else will take its place. I'm thinking of changing my name to Rip Van Winkle because of all the sleeping. That symptom is a constant.

      As for support, I only have my daughter who lives within driving distance but can only visit once a week. My son lives in Gateshead and I'm in Scotland so I hardly ever see him but he phones every week. My husband died 14 years ago so I'm pretty much alone. The only friends I have are right here on the forum and without them I don't know what I would do. They are truely my support and loads of them are in a much worse state than me. It is a case of pulling up my big girl's pants and getting on with it! eek

      I hope you get some relief from your suffering and somehow your family is able to rally round and support you.

      Take care

      Kindest regards,

      June

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    • Posted

      Hi June

      Just to say floaters in the eye can be linked to sarcoidosis. One of my friends used to work with a lady who had sarcoid and the main site it affected in her case was her eyes. She got so bad she had to give up work, though from what my friend says thats mainly because she didn't go and see anyone about it for 2 or 3 years after it started and only went when it was affecting her vision all the time.

      The moral being go get things checked out before they become a major problem. But I'm sure in your case I'm teaching my granny to sook eggs because you always seem so on the ball about getting medical issues checked whether you think its related to sarcoidosis or not

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    • Posted

      No actually not teaching granny to suck eggs. I'm a bit concerned to be honest because I went to my GP back in august 2011 because my right eye was terribly sore. When I had a good look at it (Magnifying glass and magnifying mirror - don't laugh!) I could see a lump that looked like a blister. I went to the GP and he said the battery in his opthalmoscope was dead and he couldn't see anything. (His office was dimly lit too! - don't laugh!) Anyway he sent me to one of the opthalmologists in the high street and she just said I had dry eye and here's a years supply of artificial tears! She told me the 'cyst' in my eye wasn't causing me any problems! Actually it was because it felt like a splinter in my eye but she obviously knew better. Almost 2 years ago I had my eyes tested as usual and asked the optician what he thought - I'm still waiting for an answer as he chose to ignore my question. I have to say that when I was first diagnosed with Sarcoidosis I wondered about the lump in my eye but so far no one has looked at it or answered my question. I actually had a look at it the other day with magnifying glass and mirror (I wish you'd stop laughing!) and to my horror it had grown about a third in size! I'm worried if they start prodding around my eye they will cause permanent damage. I'm not due to see my sarcoid consultant until the end of September. I'm wondering if I'd been diagnosed sooner would the optician have seen it as a granuloma rather than a cyst. Did the lady your friend looked after have any lumps in her eye? I'm just thinking how it's 3 years since this appeared.
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    • Posted

      I meant to say too, every time I mention floaters in my eye to the GP he just waves me off like its nothing so its obviously going to be hard to get him to refer me. Boxing gloves on I think!
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    • Posted

      June, I had sarcoid first then developed sjorgens and believe me it is painful and very dry eyes.  There are only 5 Kellogg Centers in the US Many more in Europe.  Check near you and see if there is a Kellogg Center as they deal only with eyes and sjorgens is what I was diagnosed.  There is a positive to that, I wear "prose lenses" which is very complexed and not anything like contact lenses.  I had to go through 6 months training before I could wear them.  They are large and you use  fluids they prescribe and it helps.  Anyway, just a thought.

      hugs,

      frustrated

       

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    • Posted

      I'd go back to the optician or ask your GP for a referral to a consultant in ophthalmics (too many ph and th in that word!). The consultant I see reckons if you have sarcoid you should get a regular check - every year - with an optician or a consultant. Because I wear glasses she didn't write me a referral letter as I see the optician every year anyway. 

      I think with the lady my friend knew it was her retina that was affected, not sure if it was granulomas or what. 

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    • Posted

      Thanks Morag. I am supposed to see an optician yearly although this past year I just couldn't afford it and knew I needed new glasses but that;s no excuse. I will go annoy my GP and get a referral as I'm pretty sure the optician I went to hadn't a clue what Sarcoidosis was.
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    • Posted

      HaHa!  I made the name "frustrated" for an entirely different discussion and I'm stuck with it...but for real, I am frustrated most the time.  Kellogg Center deals with nothing but problems with the eyes in any area of the eye.  I'm only suggesting to you and to anyone else with sarcoid if you're having eye problems such as extremly dry eyes, don't count on your OP to send you to  the Kellogg Center as my doctor wanted to send me back to this specialist who had no clue what was wrong with me...see, that's pretty frustrating(ed) biggrin.  It was me who suggested the Kellogg Center and as the doc was reluctant, and I don't really know why, but he did refer me.  And, if he didn't, I most likely would be blind by now.  (very serious about that) 

      We have to take charge of our health and especially with sarcoidosis because as some have found out, many don't know poo about it...and possibly don't care to find out.

      It reminds me that after my auto accident one in 2004 and the other 2013, exact same accident...both ran into me at 45-50 miles an hour, why? because they were actually looking out the side window and driving...well the first accident broke my back and neck and I've been living with the residule problems still and the second accident, is a feat in waiting as I haven't been diagnosed as of yet but the problem lies in the SI joint that's been separated from my hip and my L1&2 are impinging on my right nerve where the pain is all the way down the inside of my right leg and in the groin area...so, after the first accident, I also had pain also was in the left leg to my outside down to the toes and it caused weakness thus I was depending on my right leg to carry most the weight...now I'm in a conundrum because both legs are weakend and if the doctors (pain doctor and surgeon) don't diagnose me soon, I'm afraid I'll end up in a wheelchair because I cannot even walk one street block...not even a 1/4 of one. 

      (hmmm why did I write all that?)  Oh yeah! lol the 2004 accident my doctor said...oh it's just strained muscles it'll get better...and of course it didn't so, finally after they sent me to physical therapy and I could not do anything....I asked the therapist to check my MRI and see if she saw anything....she came in and said OMG! you should of never been put into therapy!  You have this wrong and that wrong....well, the next day, I went in the doctor's office for her to reveal the results of my MRI and she said....well, everything is fine!....so, because I took charge and I knew something was terribly wrong, I said, okay, may I please have a copy of the MRI results...so she said, sure....and low and behold...she almost pushed me up against the wall and said....you need to be off work immediately and go back to the orthopedic doctor and give him these results and I'm making an appointment this afternoon with him....so, when I saw the ortho doctor at first he said aww, there's nothing wrong, come back in a month if you still are having problems...OMG!! why are they so incompetent!!!  He then said, meet me next week with another surgeon and we'll get his opinion....and, low and behold..guess what....I was in surgery the next day first operation on my  L4-S1 then from that surgery...the dang nurses let me go all day with one leg not being pumped for circulation thus I ended up with a bilateral pulmonary embollism which was also life theatening...so with, I ended up 2 days after major surgery back in the surgery room for a greenfield filter put in..because blood thinners would have taken the clotting process and made all the clots come off my spine and paralyze me...geesh, so after I was healing, another area was really injured...my  neck...so after 4 months (which isn't long for major surgery on the spine) I had my neck operated on...then 8 mths later...L1-3 fused and the L4 redone....thus my eniter lower back is fused....I cannot do much at all as the surgeonS working on my first fusion L4-S1....I also had a second neurosurgeon working on my nerves along side the doctor whom was fusing me...well the doctor with the nerves...majorly screwed it up..as they nerves did not go back into the nerve roots causing them to bundle up outside the fusion...major pain with that and I'm still having it....Anyway, had I not asked my physical therapist to look at my MRI, I'd probably be paralyzed...this is why it's important to be your own advocate!! And, if you're not capable, have a family/friend be one for you.  Yes, I could have sued both surgeons and the first one who saw me and said it's muscle strain...but i didn't...and now, I wished I had...but at that time, I was in a lawsuit with southern bell...which is who hit me the first time in 2004.  Life goes on.  Money doesn't bring back the life you had or necessarily make the one you're in now better....I used to faithfully do yoga, walk 15 miles a week, jazzersize and work full-time take care of a family (two kids) and husband....My kids are grown and the oldest has 4 children and I wasn't able to pick up any of them...broke my heart because they would run to me with their arms up and I'd have to take their hand and walk them over to a chair with me and have them crawl up....the first reaction for them was for me to pick them up and kiss them....but it didn't happen.....Now, they are older, they always come sit with me and tell me they love me...so, perhaps I did something right! 

      Why, oh why am I rambling.  Most because I wanted to stress how important it is to take care of yourself because no one else will do it as good as you do. 

      Also, while I have your attention, (I hope) I've started a regimen daily taking DE food grade and it's helping with many areas I've had problems with.  It has even helped with the pain a bit...I'm on 75 mgs of Fentanyl, diladid, neurontin, flexeril and many more that pertains to the blood clots I had in each lung...my heart is jacked a bit.....so, my goal is to slowly get off these horrendous drugs or at least lower the doses and start to live.

      Love to all....stay strong!

      Frustrated

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    • Posted

      Whoops, I wanted to explain...the doctor who saw me in the beginning that said it was muscle strain...when I asked to see the MRI and have a copy....the clod...she looked at my MRI I had in the Dec 2003 prior to my accident...forgot why I had that one...but anyway, that MRI was fine...not buldges, nothing...so in a way, it was a good thing because they used that to compare....DANG!  What I wanted to say in short always, always ask to have a copy of any results from tests you've had...my daughter for example....for six years when she was younger she'd get pneumonia and have an xray...the results said...she has curvature of the spine and should see a specialist at once.....I did not catch that until I had asked for all her records...I read through six years of the person reading all her xrays (which were needed for HS if she wanted to be active in any sports)...the whole reason for the xray (which I had not known) was for the doctor to make sure she didn't have scoliosis.  That entire fiasko, I learned to get copies of every test done for myself and my family....please, if anyone is reading this and they have small children....always ask for a copy of what you saw the doctor for...who cares if they get persnickety...it's your right!  <3 to all

      frustrated to="" all="">

      frustrated>

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    • Posted

      It's easier said than done suing the doctors. I tried but no one would take my case and by the time the surgeon had told me there was nothing more he could do for me, the 3 year limit had passed. I did finally find one group of lawyers who looked at my case (Irwin Mitchell) but they were the ones who told me the time was almost up so it would be thrown out of court.With me living in Scotland the law is different anyway and it is nigh on impossible to take on the NHS. I'm in a wheelchair because of someone's incompetance during an operation on top of which a seperate doctor injected me with half a morphine injection, he had given the first half to a male patient on another ward (high dependancy ward) using the same syringe! I didn't get to sue him either. The hospital fobbed me off by saying they couldn't even suspend the doctor because he was a locum and therefore didn't come under the hospital jurisdiction, so wouldn't have mattered even if he'd killed me. I felt so frustrated and depressed. No one  has ever given a damn about me and how I was treated. I have a terrible phobia of hospitals and have refused several admissions for various ailments. Even when I had to be admitted because my heart was beating irregularily at 189 beats per minute I ended up signing myself out because the night nurse turned off the heart monitor because the noise it kept making was annoying her. The noise it was making was an alarm to tell them my heart wasn't beating properly but no one cared so I thought if I'm going to die I'm going to do it at home and not in a place where nobody cares. I'm so very depressed and totally get what you are saying about not suing them. I imagine you were like me, and the pain alone would have been dragging you down so much the last thing on your mind is going through a lengthy court procedure where people are going to call you a liar etc. I am on high doses of Oxycontin slow release with Oxycodon liquid for break-through pain. 500mls only lasts me 2 weeks. I am in pain 24/7 and it took me a couple of years to find something that controlled the pain. I don't even get the 'buzz' everyone talks about from taking opiod drugs. I was once told by a doctor that people who genuinely need the drug never get a 'high' because it's doing what it is supposed to do and it is not being used recreationally. Apparently the government wants GPs to stop prescribing it. If this happens I don't know what I will do as it is the only thing that works for me. I spent several months in the pain clinic trying everything from tens machine to capsicum ointment and freeze gel plasters! All the time I was going off my head with pain.

      I too have copies of my medical notes but important bits are left out apart from the orthopaedic consultant saying the he did not understand why his registrar did not perform the operation as he had asked. I did notice that the ward nurse had written that I had been disatisfied with my treatment and had said that "the nurses needed a good slap". It's exactly what I said because their treatment of me was shocking and one student nurse had pushed the venflon for my drip back into my hand when it was hanging out!  Straight into the tissues so my hand blew up like a melon not to say the high risk of introducing infection! Again I signed myself out. I have never lived in a place where the NHS rules and regulations were so flaunted. 2 years ago I collapsed out of my wheelchair but managed to dial 999 and the police and paramedics came out. The police broke down the door and let the paramedics in. I was dragged up by one arm into a sitting position. Told to stop 'acting' as I had been able to speak on the phone (they seemed to think that talking on the phone meant there was nothing wrong with me!) She left a huge black bruise on my sternum where she tried to bring me round. Her fellow paramedic who was just leaning over the sofa shrugged and said "alcoholic!" then he said "I'm off to look for her stash" I screamed at them to get out of my house but they didn't go. They hauled me into my wheelchair and then decided to check my heart. She said the machine wasn't working but I pointed out that she had attached one lead to my cardigan! Once she got it working she suddenly said "oh my God do you have a heart condition?" I said yes but told them to get out as I wasn't going anywhere with them. I put in a complaint but unfortunately the two police officers said that the paramedics had done nothing wrong in their opinion so again I was branded a liar and trouble maker!

      Good for you to get all family members medical notes. You are absolutely right to advise everyone to get and keep a copy. It also helps if you are seeing a new consultant because half the time they haven't read up on your notes so ask you to repeat for the 99th time what's been the problem!

      You have been through such a terrible time I can only admire your courage.

      Keep fighting the good fight

      Hugs,

      June

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    • Posted

      Oh my God! I am so sorry. I have baged on about me and pain and I should have been giving you support instead of winging about me. Your injuries from the accidents alone were bad enough but for the medical idiots to make it so much worse because they were basically to damned lazy to do their job properly. I feel so upset for you.

       I'm in a lot of pain at the moment (very hot and very cold weather tend to make the nerves pay up) so I am feeling sorry for myself and I get depressed when I'm like this too because I think how different it would have been if the hospital had just done the job right. Anyway it's good for me to blow off steam but not nice for you guys to have to read my inane drivel so again I'm really sorry.

      If you can't get around Frustrated, maybe it would be a good idea to have a wheelchair for a while. It would rest your body and give it chance to heal.

      Don't expect the physio to advise you to get a wheelchair because apparently they are not allowed to. The expect the patient to ask if it's possible or a good idea to have one then they will say yes. One told me that the new way of thinking is if a physio suggests a wheelchair then the patient could become depressed because they think their condition is even worse or that they won't get better! I've never heard of such a load of rubbish in my entire life. Everyone wants to start laying off thinking everything is phsychological. I was literally dragging myself around on crutches and physically crying with the pain. In desperation one day I asked the physio rather sheepishly if she thought me getting a wheelchair was over the top. She gave a big sigh oof relief and said she thought I'd never ask! I was like "What?" "You've watched me drag myself around on crutches, listened to me sobbing my heart out and not once did you think to suggest a wheelchair because you were worried I'd get depressed?" I thought this bloody woman has no heart but she said they are not allowed to suggest it. Reading how you are coping I honestly think you should get a wheelchair referral form from your GP or physio if you still go to one  and give your body a sporting chance to heal. You're not giving in to anything. Like I say it is just to help get you properly back on your feet. Oh and make sure they give you an electric one because believe me it is very hard to use a manual one especially if you have other problems too with your spine. Oh yes and a proper cushion. One that is at least 4 inches deep about 10cms. If you don't then they will give you a standard one that you can feel every bump you go over. I only know what the NHS in Scotland does so for us the wheelchair is free so I'm pretty sure it would be free for the rest of the UK too.

      It is quite an eye opener reading your case notes and it's not for the faint hearted because quite often you find that the medics haven't told you every thing about your condition, plus the medical jargon can be difficult to wade through and understand.. Frustrated is absolutely right when she says it is your right to see your medical notes and to get a copy of them but you may be charged for a duplicate copy - anything up to £50 and that was about 3 years ago so the charge may have gone up.I got mine for free but then I was putting in a complaint so they didn't dare charge me. Don't be put off by them trying to tell you that you can look at your notes with a medical person present that is rubbish. You can have a medic with you to explain the jargon if you want but it is your absolute right to have a copy to take away with you. Getting the copy can take some time too. It will depend on whether you want all your notes or just some from a particular date to present day. The secretary then has to get permission from everyone who has written in your notes to copy them. If the medical person refuses they have to give a good reason e.g. letting a patient read that they have a terminal illness that is going to kill them sooner than they think might be deemed as counter-productive to the patient. However it is rare these days for there to be any refusal althoug they may ask why you want them and guess what? you don't have to give them a reason. You can simply say "because I want them!"

      In a technological age that sees more and more hacking not to say loss of important data from computers I think it is a great idea that the patient has their own notes. It's not unusual to find things in your notes that the doctor never told you so be prepared but try not to get upset and remember he probably only withheld the information at a time when you were very unwell and it would not have helped your convalescence to be told at that time. Right I'm off to bed having domineered the posting board for far too long. Again, really sorry for ranting in my previous post. Too much living on my own with no one to off-load on I guess.

      Hugs all round,

      June

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    • Posted

      Hi June...first I want to tell you that by no means are you "just ranting" we are in a forum that is supposed to help one another so when you're down, you get it off your chest and when I'm down ...ditto.  As well as all the other's whom are in here.  Second, what I've been going through isn't any worse than anyone else in here...pain is pain.  Also, fatigue is fatigue...it's all relevant.  Thirdly, I believe when you wrote to Kelly you said she had 2 auto immune diseases...I believe it was me who has that because I  checked Kelly's and I don't see where she posted that...it really doesn't matter except Kelly may think you got hold of her medical records and you know something more than she does  LOL joking cheesygrin!!!  I mean I'm joking about you having the medical records, not joking that I have sarcoidosis and sjorgens disease....sucks but "life is but a box of chocolates, you never know which one you'll get"  believe me, the chocolate I got is some icky chocolate filled with that surypy gunk in the middle...hehe.  So, please, June, don't feel you're imposing because heck check out my notes....just as long.  And afterwards, I did feel better...which I hope you do as well.

      Getting to the medical records, I started immediately after they mis-diagnosed my sweet daughter...well they didn't even diagnose...that doctor ordered the xray and NEVER read any of them for 6 years.  She is 5'7 but would have been 5'9.  The reason we never noticed was because unbeknowst to all of us she was correcting her posture but she didn't even realise she was doing it...it came natural to her.  However, that was a while ago...and now, she's married and preggie (yay! a new lil baby is coming our way) but she's having problems with her legs...one side is so off kilter...you can imagine one side 2 inches leaning to the right...she has nerve pain and all...which is what my concern was when I found out she had scolosis...if that dang doctor would have checked her like he was supposed to, she would have had a brace for possibly a year or two and it would have corrected itself.  Now, if she wants it fixed, it's major surgery...fusing all her spine from neck down to SI joints....very painful and a very long recovery. Heck I had half of my back/neck fused and it took me over two years to recover just from the initial surgeries.

      Oh, where was I going with this....Get this, after I  found out about her medical issue, I went into that doctor's office waiting room...he saw me and came out like he was going to hit me...a mean and ugly face on him....well he said...what the hell are you doing here...and I said..oh my...lil boy panties too tight.........then said...you listen and listen good...you are very lucky we don't take you for all you have...but then again if you treat other paitents like you've us....you probably don't have crap...felt good...but the best is yet to come...he said get out...and I said no, I'm here for you to explain how the HELL you missed what the radiologist kept telling you to do...get her to a specialist NOW....he said...get out and told his office staff to phone the police...and they just said...umm ok...when he turned his back they all gave me the "a-ok" sign and I also told him go right ahead and phone police...in fact, let me do that and pulled out my phone....I said I believe you may be in big trouble for medical malpractice....he kept saying "get out!!" lol....So, I said sure, I'll leave but give me a min or two.  So he walked away and the people in the waiting room..same one I was in and they were listening to him and their eyes were wide open in shock....I said to all of them....you better get the baby's records each and every time you see him...because he'll mess your child as he did mine...that arrogant daff!

      Okay...told just a story a real one but it feels good to get away from our pain...even if it's just for a few minutes...agree?  So, never apologize for your freedom to speak!!  It heals us in many ways...so June, feel free to speak whatever it is you want to talk about...I know I'll give it a good listen...I'm really not a hard arse as I made myself look like....I generally just walk away and let things go...but when it comes to mama bears baby bears.........rawrrrr...look out!! LOL you know what I'm talking about...you have a child, too.

      Well my dear, I'm exhausted...I was before I even checked my email but I felt you deserve a reply before I check out!  Hope to hear from you soon....Take care everyone....rest, drink,shower, walk around a bit, eat....repeat...right now that's my life....

      Please let us know how all of you dealing with your disease? Please don't take June and I as just someone who is lonely...and rants on and on....everything from me was written with purpose...and that was to take whomever read what I wrote and possibly made you smile but most important...made you forget your health just for a little bit.  Also, let us know if we are upsetting anyone due to our long posts...if that be the case, June, I'd be happy to just send you an email.  Let us know, please

      Hugs to all

      frustrated  

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    • Posted

      Hi there everyone

      Just because I don't always post a response doesn't mean I'm not reading or thinking of you all. 

      At the moment I'm suffering from bad hayfever which is nothing really compared with a lot of you guys. Getting regular blood tests to check what's happening with sarcoidosis; my calcium is slightly high but not high enough to affect things - yet! Its 2.66 where the top end of normal is 2.60 so the consultant isn't too worried right now but wants to keep a close check on it. 

      Mean time I'll just carry on sneezing

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    • Posted

      Sorry Frustrated61 for getting your post mixed up with Kelly's it's easily done and I'm sure she will have spotted the error.

      I still apologise for going on. I started a forum over a year ago in the hope of supporting and getting support which certainly happened. I should have kept my long post for that forum where they are used to me but I was feeling down that day and I posted here with intentions of offering support and information. There is a big difference between giving support and posting a long 'moan' which is what I did. I'd had a bad day and was feeling generally fed up over a number of things both health and general things, but you don't pass that negativity over to other people who are suffering because that's just not fair. I should have read over my post before posting it but I didn't. Anyway it won't happen again.

       

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    • Posted

      Hi Morag,

      Bless you! That's for sneezing!! lol

      I'm lucky in that I've never suffered from hay fever although my daughter, granddaughter and son-in-law all suffer. I think my son suffers a mild form of it too. Do you find anything works better than other things? I'm always looking for my granddaughter because she suffers the most and has to take antihistamines which bothers me as she is only 13 this year. You would think they would have found a cure by now wouldn't you?

      I'm so happy to hear your blood calcium is down to a manageable level - fantastic! Let's hope it stays that way.

      Hugs,

      June

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