Beginning Diagnosis, Long time Symptom suffer

Chest and lungs
1

Hello,

I have been going through symptom after symptom for the past 5 years, not realizing they are all related.  Only a couple of months ago did my ENT put it on paper.  Swollen lymph glands are what brought me to the ENT, a needle biopsy was done (5 years ago) nothing, had another needle biopsy very recently, nothing but the gland has grown from a dime to a half dollar, meanwhile progressive symptoms...face swelling, loss of taste, loss of smell, fatigue, rashes, swollen eyelids, vision blurry. Shortness of breath (but I am asthmatic too, so I attributed  that to my Asthma.  Now they suggest a Parotidectomy to remove the lymph node and do a biopsy on it to see what it contains.  Should I have this done, ENT said it could still come back negative... I have had a CT Scan w and w/o contrast no chest Xrays. ENT ran a basic autoimmune panel (nothing twice).I have also been referred to a rheumatologist as well. I am confused and frustrated, I would appreciate any feedback that can assist helping me navigate. Thank You.

2

I was told I had sarcoids whe the large red blotches came up on my legs. Before this I had enlarged liver and swollen lymph glands in my chest. Couldn't put weight on me feet in the end. They had there suspicions then. I was given a fair old dose of steroids which cured me very quickly. I am still in remission after 5 years. Lucky me. Many are not so lucky. I feel for them.

Ta

3

Hello LeShawn,

I sympathise with you and understand your despair.

If it is sarcoidosis, you are dealing with an auto-immune disease that can affect any part of the body.

The insidious part of Sarcoidosis is that it's extremely difficult to detect because it mimics the symptoms of other diseases and essentially triggers these diseases to damage the relevent organs.

I suspect I've had sarcoid for decades, (I'm 53yo). When I think back, I always felt "never quite right", health wise. I often wondered how other people seemed to sail through their life with apparently no problems, whilst I always felt off colour, unexplained pain, and always felt tired and nauseous.

These were very subtle symptoms compared to the chronic asthma (36 years) and migraines (46 years) I've suffered from. It was easy to blame these two conditions, but now it all starts to make sense.

It was only by chance that sarcoid was found as a small cluster of inflammation in my lungs, when I had an X-ray and scan for my asthma. But, it was so small, it could not be treated. The treatment would do more damage than the sarcoid itself.

Fast forward to 2011, studying at university, I was always ill with something. My immune system was taking a battering and by 2012 I had to stop to allow myself to recover. By the end of 2013, I had two attacks of severe eye inflammation that turned out to be uveitis. Another auto-immune disease that attacks the eyes.

The second of these attacks not only caused severe pain, but I really felt very ill and extremely fatigued.

An emergency visit to the local hospital confirmed uveitis, but then I had a seemingly unrelated X-ray of my chest. That revealed the sarcoidosis had spread in my lungs. And as a consequence, caused the uveitis in my eyes.

 I have the more common combination of lungs and eyes involvement, but there are other awful symptoms involving the brain, heart and skin.

It is a terrible disease with a gruelling therepy attatched to it.

I have posted on other sarcoid threads and on the prednisolone threads on this site.

I have given as detailed account as possible of what I went through in those threads.

LeShawn, I do have some idea of how you are suffering and wish you all the best for the future.

Make sure you surround yourself with health care professionals you are comfortable with and you can trust and rely on. 

Take Care.

 

4

I'd be very reluctant to have surgery given the odds! Can they not do a biopsy without removing the lymph gland? As you are asthmatic would have thought a chest X-ray would be in order too. That's how mine was picked up  and it has since spread to my sinuses and eyes(blepharitis). Can understand your frustration my chest dr( there's no consultant where I live) has been very dismissive so go with your gut feeling and read up as much as you can! 

5

No one has even mentioned chest x-ray...my primary, was clueless sent me to the ENT, now the ENT other than wanting surgery is sending me to a Rheumatologist. For them it's new, for me, it's suffering for 5 years + with no answers, Only baffled MDs. I do appreciate the ENT at least giving me a name I can research..but of course, they are not wanting me to "google" diagnose myself...But I don't want to be cut open for a "possibility" unless it's a very good possibility.

6

I've been told that because so little is known about sarcoidosis patients probably know more about the condition than the Drs at hospital! I've read several books written by people who have sarcoidosis and it's amazing how treatment varies! Plus if you read up about it you can ask relevant questions! I got several books from Amazon and it's been a real eye opener. Go for it and blind them with science! Good luck

7

You need to see a respiritory specialist and have lung function tests done. My raised red rashes on my shins helped with diagnosis. Godd luck. All my CT scans and chest x rays where normal. I was diagnosed with stage 1 pulmonary sarc yesterday. Dont need any treatment. Watch and wait. Good luck

8

If you have Sarcoidosis it should show if it is advanced at all with a CT Scan, MRI or PET Scan.  It looks like mestatic cancer and could be misdiagnosed.  Did they see anything on the CT Scan?  Is it possible to have a Lung biopsy?  They did biopsy on lung and lymph nodes and were able to confirm for me.  I know it is a dangerous procedure and I am;not sure if they will do without the PET Scan showing the masses.  

9

Hi LeShawn,

Firstly, I'm sorry you have had such a hard time finding reliable medical care, it just makes everything about being ill so much harder.

Sarcoidosis affects people in many different ways, which can make diagnosis difficult. However as the organ most affected, in the most patients, are the lungs a Respiratory Physician is usually the specialist who is the most knowledgeable about the illness & is often the primary Dr. (Coordinating the whole picture using info from other specialists - which other specialists will depend on which organs are affected in each person's case)

There are a few different ways to look for/ confirm a diagnosis of Sarcoidosis. An ACE blood test, chest X-rays to look for enlarged lymph nodes in the chest & or granulomas in the lungs & a biopsy (often of the lung ,or a lymph node, or a rash on the skin).

As far as I know the only definitive test is a biopsy. Unless the Dr can confirm the presence of granulomas by biopsy diagnosis can only be based on collecting as clear a picture of symptoms as possible & ruling other illnesses out. (Opinion)

I had a very large lymph node removed from my neck, for a biopsy, to confirm a diagnosis of Sarcoidosis after a chest X-ray showed the signs of Sarcoidosis.

I suggest if you want to be sure a biopsy may be required, but perhaps the discussion should also include a question of which lymph node to remove as the repercussions for you may differ...?

10

Thank you sooo much for the details, this is a GREAT help.  It so happens, that an ENT was who I was sent to because of "sinus like" issues, the ENT discovered and had the CT Scan ran on the Lymph node because it was so large, as of last week the Dr found that other glands are getting larger.  The lymph node is near/around the parotid/salivary gland but apparently they have to move my facial nerve on the side..(a bit confused) to get to the lymph node.

11

Hello LeShawn, InRemission,

I have had 3 lung biopsies all up. The first was soon after the X-ray confirming that the sarcoid granuloma had indeed spread, the second was ordered to see if there was any change after the first course of Prednisolone. The damn sarcoid came back in mid 2015, then a third biopsy this year after the conclusion of the second course of Prednisolone.

I had a violent reaction to the iodine dye used for the MRI, that resulted in convulsive fits and dry wretching after 30 seconds of it being administered. It happened twice, I am never to be given it again.

I'm not confident of saying I'm in remission. All I can confidently say is it has stopped spreading.

As there is no cure, the effects of sarcoid are still present. The tight chest has remained, the pain in my breast bone (sternum) is there all the time, the constant fatigue is still imposing itself on me every day.

This, along with the asthma I have had since 1982 and the worsening osteo-arthritis makes things..... difficult. My breathing is a painful, tiring activity. I was told, the breast bone pain is probably a combination of arthritis and the scarring of my lungs due to the sarcoid.

Then there are the more subtle effects of a stuffed immune system. I get infections more easily, they have a heavier impact and they take longer to get rid of. I vaccinate for whooping cough, pneumonia and influenza.

I wear a Medic-Alert bracelet, it has helped when I've had to go to "Emergency" in hospital. I always have a small soft case packed with my hospital clothing.

12

I know exactly what you mean about chest pain. Have had sarcoid for over 10 years and my chest feels like this every morning! 

13

LeShawn, you are the only other person I know (beside myself) that has asthma and sarcoidosis.

There is no information anywhere I can see, that caters for sufferers of both conditions. I have looked on both sarcoid and asthma sites and have come up with nothing.

Have you had any luck?

14

Hi again

A few thoughts...

I think Sarcoidosis can affect the sinus / nose. I don't know much about it, but it was an ENT surgeon who removed the lymph node in my neck for biopsy. During the initial consultation he did a thorough examination of my sinus in case the Sarc had spread to the nasal cavities.

I'm concerned that your ENT just doesn't know enough about Sarc. If there was/is a suspicion of Sarc then a standard chest X-ray (not necessary for a CT scan or MRI to begin with) and an ACE blood test should be the first things to check. I believe it is possible to have both those tests come back negative & actually have Sarc, so they are not definitive ... but MOST people with Sarc will have changes to the ACE & changes in their chest, so these tests are commonly used as initial screeners, to indicate the likely presence of Sarc.

I did A LOT of research at every stage of my journey with this illness. There is good information out there. I think it is so important to be an informed and knowledgeable patient. This is your life. This is your body & this is your future. Doctors are just people, some are good at their job, some aren't. Sometimes we all have bad days & make mistakes - Doctors too.

It is scary and exhausting to be sick, being knowledgeable & participating in decisions / taking control of your medical care, really do help you get through the process more easily.

Good luck to you x

15

Hello Rachael,

You have introduce another inflammation condition I have not heard of:

Blepharitis, inflammation of the eye lid !

And your right, it is amazing how many different treatments people are having.

What that confirms is what my thoracic specialist pointed out. Sarcoid is incredibly hard to treat, as it not only affects every organ in the body, triggering secondary inflammitory diseases. But, that it has to be treated in such a way that is almost specific for each sufferer.

 

16

Took me 18 months to convince my surgery there was something wrong with my eyes! Fortunately a young but very smart optician picked up the problem and got me referral and the consultant told me blepharitis had everything to do with sarcoidosis! It's so frustrating some times!

17

No luck at all.  This is all so new me, and I am trying to find all I can to be well informed.  But one frustrating thing is finding a dr who is familiar and can put me on the right track with other drs I may need. 

18

Yes Rachael, and all the while, the sarcoidosis goes about it's business causing spot fires elsewhere in the body.

My primary organ involvement is lungs and eyes. But I have nothing but sympathy for those who suffer neuro, pulmonary and the ghastly disfiguring skin sarcoidosis. My heart goes out to them.

19

I would like to think there is a doctor who could show some interest in sarcoid and wants to take on the responsibility of managing your health.

If there is no general practitioner that is familiar with sarcoidosis that is near you, then the only option is to find one that you can trust and you are confident of their ability.

Explain your complex condition and that you want them to be your treating doctor to manage your health and become familiar with sarcoid. They should also be your single point of contact for specialists you will require. This way, correspondence is all in one place.

Do you have many practices around to choose from? 

20

My ENT referred me to a Rheumatologist, but as of this month, she won't have any open appointments until Jan/Feb 2017!   I have even put feelers out in the forum for my area.  My ENT is "aight" but he seems, kinda indifferent.  He is doing my biopsy because it's his field...pass that I don't know.