Sarcoidosis - not enough care and attention given to sufferers

Thanks Morag

Hi All and welcome to the forum Cassy,

Like you Cassy, I have the lung nodules, breathlessness (slight one now compared to last winter) dry &sore eyes, severe fatigue, fuzzy brain, joint pain in all my limbs, loss of strength & stiffness in all limbs, pins-needles in arms, hands and face, swollen & painful lymph nodes, actually all over my body (under arms and breast, chest are the worst) , constant thirst and dry mouth are known too. I actually drink over 3 liters of plain water daily.. I can also taste mucus back of my throat, although mucus almost never comes up, I can still taste it.. really weird .. My ankle pain is however the worst.. (inside side), they were very swollen over a year ago (for about 10 weeks), swelling is away but pain has stayed and I have now got the spider web veins..

I'm struggling with energy levels too, I am so tired all the time that I just want to cry.. I fall a sleep every time I sit down on a train to get to/from work, I can even sleep when I stand up.. I can sleep 12 hrs per night at the weekend, have lazy day and still be completely exhausted Monday morning… Last few weeks though, in weekdays, I am lucky if I get 5 hrs sleep.. Last night I think it was 2-3 hours. My joints are so stiff that I have the urge to stretch all the time and therefore cannot get comfortable in bed.. Unfortunately painkillers do not help with the stiffness .. although it can be pretty sore too. This morning I got up half 2 am and went downstairs into lounge to do 10-15 minute stretches.. My cats looked at me like I had lost the plot.. It actually helps me now,( slightly) to get comfy in bed, when I do about 30 min stretches just before I go up to my bed.. I am thinking of taking up yoga or something to see if it helps.. and then these horrid night sweats and I am not 40 yet so don’t think it is that time yet.. I am always cold except when in bed (no heating on at night and window is open, quilt is also light).

Answer to your question if the respiratory specialist will just treat all the areas that are affected or do they refer to other specialist?- They should do if you have got other symptoms. My first appointment was with Rheumatologist who also ordered X ray and CT scan and she urgently referred me to Pulmonary specialist. It was the biopsy and bronchoscopy what actually confirmed my diagnoses.

I have actually put on weight- about a stone in last year or so and just read from somewhere that NSAID’s side effect can be weight gain..

Hope you get it all sorted with your specialists, you’ll get to see them quite a bit in future.

All the best to you all and hopefully you are all feeling much better soon. The cold and Sarcoid are not exactly the best mix!

Hi MM,

Thanks for your message. How you described what you are going through sounds almost exactly like me especially the fatigue. I found it so hard to get used to still being as tired in the morning as I was the night before. I'm hoping that now I've finally got a diagnosis I will find it easy to cope with as I'll sort of know what to expect & can hopefully pick up tips & advise for ways to ease the symptoms

Will be glad when I finally get to see the specialist. I waited for what feels like years to get this sorted so guess 6 weeks won't make much of a difference

Cassy

P.s meant to add about using a daily fluoride ( with no alcohol in ) mouthwash in between brushing is a good way to help prevent tooth decay if suffering from dry mouth. Also best not to rinse the toothpaste away with water after brushing & just spit out as this will also give you extra protection. Just thought I'd add in case anyone didn't know x

Hi again Cassy, in answer to your question about being referred to other specialists for different symptoms I'd have to say that my respiratory specialist who diagnosed sarcoidosis does send me to other specialists when I tell him about different symptoms. He did say that for some of the symptoms he wouldn't send me for tests because the treatment would be the same regardless and didn't want to put me through unnecessary tests. I must admit I feel like I glow in the dark with the amount of x-rays, CAT scans and MRI scans I've had in the past 2 years. He usually sends me to other specialists if he thinks the symptoms are not connected to the Sarcoidosis but anything that he thinks is connected he just tells me that the steroid treatment and immune suppressants will take care of them so no need to see other specialists.

I don't get numbness in my breast tissue but I do get bruising for no reason so I'm guessing it is due to the steroids. I do get deep numbness in my back across the scapula area. It tingles and has a sort of crawling feeling. It's really horrible. Please make sure you tell your doctor about the numbness in your breast and if you haven't had a Mammogram lately ask him to refer you for one just to be on the safe side.

I think the sensation is actually coming from your lymph glands in your chest because you say the feeling is deep in the tissue. Your lymph glands will be very swollen because of the Sarcoidosis so are probably pressing against something. I had terrible pain in my chest when I was first diagnosed and I thought it was angina pains I was experiencing but it turned out to be huge swollen lymph glands deep in my chest that was causing it.

Unfortunately pregnancy does tend to exacerbate symptoms if you have an immune system disease. This is why women who have MS are advised not to get pregnant as it usually advances their disease quite markedly. Pregnancy changes hormone levels etc so not surprising that diseases can appear to exacerbate during that time. Having said that you would probably have suffered all the symptoms in the same extreme way whether you had been pregnant or not. Everyone in this forum has suffered extremes of symptoms at some time or other during the course of their disease so try not to worry that your pregnancy made it worse. The terrible fatigue you are experiencing has nothing to do with you being a new mum. There is a huge difference between tiredness and fatigue. You can get extra sleep and the tiredness will alleviate whereas the fatigue just persists. When my fatigue is at it's worst I am only awake for about 6 hours of the day as I can't stop myself from falling asleep. I'm currently going through a bad patch of fatigue at the moment and keep falling asleep in my chair. The doctor who tells you it is due to being a new mum doesn't know what he's talking about and he should have realised it wasn't the run of the mill post partum tiredness. All I can advise is to have a nap when baby is sleeping. Housework etc will still be there when you are feeling more able to cope with it.

Hi MM. Remember a while ago I asked if anyone had spider veins and if it was due to the Sarcoid and you said you had them? Well when I told the respiratory specialist about them, he didn't look at them but he is sending me to the dermatologist for skin scrapings on 18th of this month.

Did your specialist say anything about your spider veins? I'm not quite sure that skin scrapping will reveal anything. It's not like the skin is dry and flaky or anything. They certainly are traveling up the legs though. Both feet and ankles are swollen and both ankles around the joints are deep purple. One other thing I've noticed is pain up and down the shin bone, a bit like shin splints. Do you get this too? I just can't keep my feet warm although because of the extensive bilateral foot surgery I'm thinking it is due to that rather than the Sarcoid. Anyway I'll let you know what the dermatologist says after my appointment.

I'm sorry to hear you are having such a bad time sleeping. I hope it improves soon.

Hi June,

Thank you, I slept a bit better last night but could have been because I was beyond any normal-usual exhaustion due to not having much sleep previous night. Hopefully as spring comes, some energy will also return. Maybe I need to take up red wine drinking prior to going to my bed

Well, my sarcoid started from my ankles, the spider veins seem to have developed soon after the swelling had gone down but the pain is getting worse. I have not told anyone yet about it as my hospital appointment is in April (seeing the Pulmonary specialist in March but prob not their area) Inside my ankles, just under the ankle bone area is really sore and really sore to touch. I do get the pain sometimes along the side of my inside leg ( I am guessing bone pain). The leg or chin pain could however be that I am walking/ moving differently because of my sore ankles.. I don't see either what good would dermatologist do? Please keep me posted what they say, would be interesting to hear.

Love to all,

PS, thanks Cassy for suggestions to help with dry mouth. I'll give it a try

Hi MM,

It is tempting to attribute every symptom to sarc, but some things are drug related and some, in my case anyway, age related :-(

I have very prominent veins on my lower arms which I've been told is because the prednisolone has thinned my skin. They swell up and hurt when I get hot. My lower arms have also become very sensitive and hurt when exposed to cold air. I have lumps under the skin rather than spider veins on my lower legs which I thought was sarcoid, but have been told are due to "chronic venal changes". These also sometimes ache. I have trouble with my lower back and hips but again this is not related to sarc. However, the fact I have "significant" osteoporosis in my lumbar spine is due to the combined affects of sarcoidosis and steroids. In the end, whatever the cause, the symptoms have to be endured.

I know Di, it is tempting. Could be just coincidence or could be some kind of after effects from my previously my swollen ankle bones.. It's just the spider veins developed in 6 months or so and I am only just approaching 37.. but hey, some people get older sooner than others, I had gallbladder stones (tiny ones like lentils) when I was 22- 23.. that's not suppose to happen this young either..

Cassey I admire your strength looking after a wee one in your condition, it will hopefully get much easier soon for you. I have got 2 teenagers, so I get to have at least a long lay in at the weekends. Which usually helps feeling better at the weekends..

MM

Thanks MM. I do worry at times if my energy levels affects my son at times as struggle to carry him for long & limited in type of play we can do when fatigue is at its worse but I do try my best so by the time bedtime comes I'm practically on my knees I imagine teenagers have their own different challenges esp 2 of them

I read that in some patients the appearance of spider veins around the ankle may reflect a risk of leg ulcers developing in the future. Something to keep an eye on. Hope you all get some answers from the specialists. At present I don't have the spider veins but I do get the swelling , stiffness & painful ankles.

Thanks June. I'm hoping my resp specialist is as good as your sounds. The SPR was extremely annoying as I saw her twice & both times she was questioning the fatigue. She was pregnant herself, possibly her first, so I wonder if she just expect every new mum to just be tired. But like you said there is a distinct difference between tiredness & fatigue which I shouldn't have to explain to her.

I do agree about my lymph nodes in my chest. My GP said they were extremely swollen. I think this was the reason why I could continue with the bronchoscopy which the consultant didn't consider before doing the procedure.

I did speak to a couple of GP about three years ago regarding the numbness &neither of them knew what the cause was & didn't seem overly concerned & I think due to the other issues with my health I just accepted that but in the back of my mind I knew it wasn't normal. As no one else seems to have the symptom I might pay a visit to the GP again & insist on that mammogram. I'll also mention it to resp spec.

Thank you all for your advise & comments to my messages. I'm in a bit of a dark place at the moment & think it is just all getting too much for me & you are all helping me cope x

Hello everyone, I have stumbled across this forum in my trawl for info on the internet and it is certainly more useful than some of the sites out there.

I seem (so far) to have been luckier than some of you in having Sarcoidosis (although not fully diagnosed yet) recognised as a possibility even though I am showing virtually no symptoms, apart from occasional bouts of an irritating cough.

It was on reporting my cough, which hung around a bit too long, to the doctor that got the process started Back in November, thought it was prob a chest infection and expected to be sent away with some antibiotics. Instead she sent me for a chest x-ray which came back as abnormal and was quickly followed by a CT scan, in the meantime my cough had vanished and I have no other symptoms. A CT scan showed indicators of Sarcoidosis. Within a couple of weeks, I had a bronchoscopy which indicated but did not diagnose sarcoid. They then followed up with an EBUS with the same result.

This week they repeated a CT scan to see if the swelling on the lymph nodes had gone down, which is hasn't so they are now recommending a Mediastinoscopy. I'm really not sure if I want to go down this road. If I don't have any other symptoms, is thee any point in undergoing surgery just to conclusively diagnose something... Especially if the recommended course of treatment is then to leave it alone and see if it goes away by itself.

I was fully prepared to tell the doctor that today but he threw a slight spanner in the works but mentioning the extremely small - but still there - chance that it could be Lymphoma......hmm!

From reading the forum it looks like several of you guys have had the procedure, and the scars range in size from 1-3 inches. I know it sounds terribly vain, but the though of having scars around my neck/collarbone is quite upsetting - I' had keyhole surgery before and 10 years on I can still see the scars but they aren't permanently on display like these would be. It just all seems a little scary to be going through operations when physically -I feel fit as a fiddle.

Anyway, I just wanted to drop a note to let you all know how helpful I found all you open discussion. Feelsbetter even having just written it all down.

Welcome Fitzegee,

I've only just joined the discussion & have also found it has helped.

I can see how you have a difficult decision to make. When you had the bronchoscopy did the consultant take a lung biopsy as my consultant tried to when I had mine as he said its the best way to diagnose sarcoidosis but due to pain he was only able to take biopsies from the nodules. If he/ she didn't is it worth asking to see they can do it this way before having the Mediastinoscopy. Having said that this might be specific to my condition & might want to check out other conditions with you.

I have read that its possible to have sarcoidosis without displaying many symptoms & often the lungs are affected first.

Glad the forum has helped you too xx

Hello Fitzegee and a huge welcome to the forum.

I'm so glad you have found the forum helpful and I hope you continue to join in as everything discussed here is more often than not a help to fellow sufferers.

I totally understand your reluctance to have the Mediastinoscopy done and in honesty think that as every other test is pointing towards Sarcoidosis it may be one a test you don't need to go through. If I were you I would discuss it further with your doctor to see if it really is an absolute necessity that you have it done. I find with other members that it is usually the other way round with the diagnoses in that the tests point at other possibilities and not at Sarcoidosis which ends up in needing more tests to give an accurate diagnoses. As you have already had a lung biopsy done and the fact that it also pointed to Sarcoidosis I would be thinking long and hard about having this test done too. As with all invasive tests there is of course a risk factor so again you need to discuss this with your doctor.

I was diagnosed after having a bronchoscopy and lung biopsy but in my case my respiratory specialist said I was the worst case he had ever treated and even my blood tests were off the scale, so there was no doubt in my diagnosis therefore it would be wrong of me to advice you not to have a test that your doctor is saying he would like to do. Sometimes it is better to be safe than sorry as you wouldn't want to find out at some later stage that you had something else wrong whether it is Lymphoma or something else. Even though you are presenting with Sarcoid-type symptoms it is possible to have more than one thing wrong with you (Sorry, I'm not trying to scare you) and Sarcoidosis mimics so many other diseases it's not surprising they have problems getting a definite diagnosis. In fact we were just discussing how easy it is to blame Sarcoidosis for every symptom we get and it is so true.

It's not being vain to not want a visible scar but better a scar that can be easily hidden with make-up than to be wrongly diagnosed and given the wrong treatment. Key-hole surgery has changed quite dramatically over the last decade and most surgeons try their best not to leave scars. There are a lot of things you can do to help the scar heal too such as using bio-oil which really does help. The more gentle massaging with oil over the scar the flatter and more invisible it will become. There are also a huge amount of cosmetics available actually for scar cover-up so please don't let the fear of scarring stop you from getting the correct diagnosis.

I truly hope you will stay with us on the forum. The members are so good and so supportive of each other I think it would help you a great deal. It would certainly help you if and when you develop any other symptoms. Diseases can be very frightening when we get them and even more so when the disease turns out to be so rare that even the doctors don't know enough about the disease to dispel any worries you have. This is why I think a solid member's group is essential. Everyone is there for everyone else so there is always a shoulder to cry on. It is so important to talk about how you feel and talk about any worries you have because worrying makes illness worse whereas talking things through makes people feel better. As you yourself said, you feel better for having written it down.

Sorry I've gone on a bit (it's what I always do!!!) I just wanted you to feel welcome but I also wanted to explain the 'for' and 'against' having the Mediastinoscopy. I hope what I have said has helped you.

Let us know what you decide. Either way we are all happy to offer our support.

Kindest regards,

June

Morning all

Fitzegee, welcome to the mad house ;-)

Your symptoms sound very much like mine, with me it tends to be a really irritating dry cough, fatigue, swollen lymph nodes and renal function impairment. I saw the renal specialists first of all and one of them wanted to do a kidney biopsy but her colleague decided on X ray and CT scans first. Next thing I know I have one of them on the phone saying we've made an appointment with haematology department for you on Monday - this was late Friday afternoon. She wouldn't say why so that was a pretty stressful weekend.

Anyway at haematology the word lymphoma was mentioned - aaarrrrgggghhhhh! as they say. But rather than do any really invasive procedures the consultant here arranged a needle biopsy of the lymph nodes in the chest using ultrasound to visualise it. That got them enough of a tissue sample to rule out lymphoma and rule in sarcoidosis. So maybe its worth your while asking the doctors if they could try that as an alternative before going for "real surgery".

It took 10 min, including the time spent waiting for the local anaesthetic to work. Just a wee needle which takes the sample, they took about 8 from me in that time. And once it was over I got a sticking plaster about 1 inch long at the most and the closest to scarring was the same kind of wee mark you get after the doctor has taken a blood sample

Phoning the respiratory consultant later today to find out what the latest blood tests are saying and what dose of steroids to use for the next month. Will keep you posted

Morag

Hello everyone, thanks for the replies.

Cassie, they did take a lung biopsy during the bronchoscopy - in fact I think they took it just from the lung rather than the lymph node during the bronchoscopy - which seems a little silly to me given that it was the lymph node that was enlarged.... they also did a wash of the lungs at that point - think they were checking if it had spread to the lung during that test.

thanks for the info on the needle biopsies Morag, I know they took biopsies before during both the bronchoscopy and the EBUS procedures but they were too small to be conclusive so I suggest it may be the same with a needle biopsy but is a question I will definitely ask..

Ailsa, thank you for the reassurance on the scaring - I am sure that thinks have come on in leaps and bounds in the last decade and it certainly wouldn't stop me having the procedure if I thought it was really necessary.

I guess that is the bit i am struggling with internally - would be happy to undergo the op if it was to rule out a serious risk of Lymphoma but as they are only rating that as a very very small possibility - and surely I would be ill or at least have some other symptoms if I had that. i would also fully understand the need for the procedure if they were suggesting a course of treatment as you wouldn't want to treat something that you weren't sure on.... but they aren't going to treat....ah well - let's see what the doc says once he's spoken to his other specialist friends....

Just feeling quite lucky at the moment that I don't seem to have some of the awful symptoms that you guys are having. I also have 2 boys aged 5 and 14 so not sure I have any time for fatigue :-)

Cold comfort I know, but when I was faced with the prospect that it might be lymphoma both my GP and the specialist said "Oh but don't worry, if its lymphoma its one of the best things of these type to have"! And actually the haematologist was convinced that it was going to be lymphoma not sarcoidosis. But hey she was happy to be wrong.

I think it depends exactly where they do the biopsy how likely it is to provide a useful diagnosis. It was the lymph nodes themselves that I got the needle biopsy on, which gave them a good sample to analyse for pathology but the respiratory consultant reckons that if it had been a lung biopsy it wouldn't have been nearly so clear because lungs are so big in comparison to lymph nodes. So there wouldn't have been so good a chance of getting a bit of tissue that actually had enough sarcoid pathology in it to show up.

Got a phone call from the respiratory consultant - I am perfect! Ok, so I knew that anyway :-) Shame she then changed it to say well your blood test results are perfect or close to perfect. So I'm down to 2.5 mg/day prednisolone for the next few weeks.

Good way to start the weekend