Cardio Sarc

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Please Help need AdvicePosted about a minute agoI'm Male 33,

I was diagnosed with sarcodosis 2 years ago in my upper hiller lymph nodes since then its almost gone

But.......

since November Last year Ive been getting these symptoms in 30 minute to 2 hour periods , usually in the Afternoon but not restricted to.

I'm going for an endoscopy next week but fear it may not just be acid reflux related.

I go to the gym 3 times and weight train with cardio. ( no steroids etc )

1)       Pressure sensation in middle of chest ( not intense pain )

2)       Pressure in Neck and throat and under ears.  ( constant during episode )

3)       Constricting wave feels like a huge lump moving up throat. ( frequently during episode )

4)       Losing feeling in Arms and hands ( Arms feel light and lose control in fingers )

5)       Pains in chest. ( not intense , more of an ache )

6)       Shortness of breath

7)       Cannot talk for prolonged periods. ( husky voice )

8)       Ranges from 30 ins to 1.5 hours ( sometimes stops then starts again )

9)       Heart felt like it had slowed in pace then stabbing pain and rushing feeling.

10)   Missing heart beat sensation / flop.

11)   Light headed

12)   Faint.

13)   Total loss of concentration and ability to think ( short term memory loss )

14)   Cramp and spasm in hands / arms , fingers curl in ( mainly left arm & hand )

15)   Feels worse when I’m Sat down. Gets a bit better if I stand

16)   Sensation in left wrist

17)   flashes of light in vision.

18)   Feels like I’m going to stop breathing.

19)   Have to take a deep breath.

20)   Tongue swallowing sensation ( Very mild more tightening of throat )

21)   Sometimes feel a cold rush from center of chest ( relief )

22)   Pins and needles left hand / arm

Im going out of my mind any help would be much apreciated.

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9 Replies

  • Posted

    Hi Jasperjames,

    Obviously my first question is to ask if your sarcoidosis is stil in active mode or has it gone into remission?

    Like many sarcoid sufferers you come with a huge bundle of symptoms. However it is important not to blame sarcoid for everything unless you have had tests to either prove or disprove that sarcoid is causing the symptom.

    Having said that I can tick almost every symptom as being one I have or have had.

    I too was diagnosed over 2 years ago and can remember being terribly ill until they started treatment.

    What if any medications are you on?

    Is your biggest fear that it is something to do with your heart as clearly you are very worried and upset at the moment?

    If it is any consolation, there were and are times when I feel I am going to have a heart attack as I have irregular fast heartbeats.

    Because the granulomas that can appear due to sarcoidosis can form anywhere in the body then it is natural to assume everything is caused by sarcoidosis. The pain in your chest is very likely to be caused by enlarged lymph nodes and the pain in your neck is also probably due to enlarged glands. I would liken the pain to that of mumps which is understandable because mumps pain is due to the very swollen salivary and parotid glands and sarcoidosis mimics this because of the swelling in the glands and lymph nodes.

    Since being diagnosed with sarcoidosis is your doctor keeping a check on you? Do you see a respiratory consultant or other consultant about your sarcoidosis?

    Sarcoidosis, whether in remission or active should be monitored as should your medication because medication can also cause problems especially if taken over a long period of time. Also just because your sarcoid was getting better that doesn't mean to say it won't flare up again. No one knows what causes it but like any disease stress only makes it worse. Perhaps you have had a bad event happen in your life recently that has caused things to flare up again. You have to remember that there is no cure for sarcoidosis, only remission. The remission can last and you never have another bout of the disease or you can be one of the unlucky sufferers who experience multiple attacks.

    Why don't you go and ask your GP to either refer you to someone who knows about sarcoidosis or get him to do some blood tests to check calcium and ACE levels as raised level point towards the sarcoid getting worse again. Also he should have sent you for at least a straight forward chest x-ray to see if the sarcoid is evident in your lungs as the breathlessness would indicate. He might even agree to send you for a CT-scan which would obviously show much more.

    I am assuming that when you first had sarcoidosis you didn't have half the symptoms that you are experiencing now. Were you ever put on steroids? This tends to be the drug of choice when the disease is at its height. I will be on steroids (low maintainence dose) for life because every time I come off the steroids the sarcoidosis comes back.  This unfortunately can happen.

    Try and calm down a bit because you will definately ake your symptoms worse. I actually collapsed due to getting so stressed out about sarcoid in the early days. I was the same as you. Multiple symptoms which were frightening to say the least plus on first diagnoses I was told I had lung cancer throughout both lungs. You can imagine how frightened was.

    I will let you answer all the questions I've asked so I can get a better picture before I give any more advice. If it helps to reassure you, I am a retired Registered General nurse so do know what I am talking about - most of the time!

    Try not to get yourself all worked up I think you wil feel better when you have some of your questions answer.

    Keep strong,

    June

     

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  • Posted

    Hello Jasper

    I have sarcoidosis and sjogrens disease.  The sarcoidosis was found in my lungs and the lymph nodes.  I can offer some advice and that would be to take in the list you've presented here to your doctor and ask them to refer you to the proper doctor.  My concern would be anything with the throat and swelling of the tongue.  If any of the symptoms appear before you see a doctor, I'd head straight to the emergency room.  You can't be too safe when it comes to your breathing. 

    I can also say that sarcoid is a tricky disease it comes then goes, then comes for a longer period then goes, then comes and stays forever.  In my case, it's spread to my nose, ears and ear lobes, eyes, gums and skin; sjogrens can also effects those areas too so there's a double whammy. 

    In all honesty, your symptoms don't sound familiar to me as far as my sarcoidosis.  If you are worried you have it in your heart, make an appt with the Cardio doctor.  I do know doctors don't like to take a biopsy from the heart, because it's very painful, however, they can do an ultrasound or a CT scan which I have to have done yearly. 

    As far as acid reflux, maybe you do have GERD.  The good thing about that is it can be treated!  I do have GERD and with the correct meds, I have been symptomatic free!  Good luck to you, Jasper, and let us know how you're doing after you see the Endoscope doctor.

    always

    frustrated

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  • Posted

    I will stay on line in the hope that you are still on-line too and will answer any more posts ASAP

    June

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    • Posted

      Well June!!  I'll answer your posts anytime.  You know, after re-reading and re-reading Jasper's symptoms, I guess I can relate to a few. The breathing is a big one!!  And, since Jasper was dx'd with sarcoid in the lymph nodes perhaps it is in the lungs.  In any case, Jasper, June is a good soul and you are in good hands with her.

      warm regards

      frustrated

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  • Posted

    Thanks for the quick responses.

    i have had allot go on in my life over the last year or so and i cant entirely rule out something like a panic attack.

    but im not prone to things like that , but then again who is

    Its a very strange situation as the more i think about it the more i realise that it almost exclusively in the afternoon.

    with the exception of a few times.

    I did think coffee allergy at one point.

    Ive been to the doctors with it and was told it was a nasty virus. Although i wasn't inspected and no tests where performed.

    The Gerd is an issue and Ive had it for years.

    Im going out of my mind as its either

    panic attacks ( not life threatening )

    Cardio Sarc ( not good )

    Gerd ( just cant see gerd making me lose the function of my fingers and short term memory loss slurred speech etc )

     Ive got an endoscopy on the 14th and the final checkup for my sarc on the 13th.

    So hopefully i should get some answers.

    Nice to talk to people who understand

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    • Posted

      Your writing makes it sound like you're a bit settled down.  I agree, Gerd wouldn't cause those feelings, but I like you, was trying to think of something. 

      I am perplexed with those symptoms because there are so many, I feel for you.  Cardio sarcoidosis is extremly rare.  If you're able, why don't you google heart sarciodosis and it will lead you to the many types of Sarcoidosis which will lead you to Sarcoidosis Foundation   you should find everything you need.

      Good luck.  I am anxious as to what you find out on the 14th.  If you remember, please follow up in here to your final answers.

      Thank you

      frustrated

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    • Posted

      Hi Jasperjames,

      Certainly getting yourself so worked up can cause cardiac symptoms because your body is releasing adrenalin in response to your stress. So while your body can't use the adrenalin because you are not going to fight or run its effects are still causing your body to react. This can cause your heart to race and feel like it is coming out of your mouth.

      Coffee and tea are super high in caffeine and can definitely cause heart arrhythmia so try stopping drinking either of these for a week and you will notice a difference. Have a look at what you are eating and drinking regularly. Try keeping a diary for a week and chart food, drink and any attacks you have. Go over it and see if anything jumps out as coinciding with these attacks.

      The fact that your attacks seem to be happening in the afternoon might just be because your are more tired then or you notice it more then. Try to notice if anything is happening just before an attack. E.G. trying to meeet a deadline, or dealing with someone you don't get on with very well etc. If this is happening then it is possible that it is a panic attack but given your list of symptoms I would be enclined to think it isn't panic attacks that start the symptoms but you are possibly making the attacks worse because you are stressing about what is wrong.

      Doctors say ' a nasty virus ' when they don't know what is wrong. I am rather shocked that your GP hasn't ordered any tests other than endoscopy given your symptoms. A trip to the neurologist to discount anything going on when you are complaining of losing function in your fingers and get slurred speech. You can tell your GP that you want to see a neurologist. He can't refuse your request. Bare in mind that neurological problems can start from simple things such as the way you sit in a chair, or the chair itself if it is causing malalignment of your spine when you are sitting. Repetative injury syndrome causing pain and loss of use of a hand and wrist because you use a computer a lot during the day or simply leaning on your arms a lot which has aggrivated the nerves. People who sit in a chair that is too big for them can get swollen feet and numbness in their legs because they are cutting off circulation and impairing nerves by dangling their feet for long periods. You get my drft? These are things that we all overlook because it has become a habit. My son-in-law had severe pain and loss of sensation in his arm and it turned out to be his computer chair because he sits on the edge of it (like so many of us) and using a computer mouse for hours without a break (he is a graphic artist). He had to endure months of physio to correct the damage he had done so have a good long look at things you do and work etc.It's easier to dicount the simple things first.

      GERD and other gastrointestinal problems can cause a lot of nasty symptoms that you wouldn't think was part and parcel of the condition. For example Gall Bladder problems causes pain in the right shoulder and radiates down the arm. A sliding hiatus hernia puts pressure on the chest and can make you think you are having a heart attack. Any gastic problem can make a person believe they have a heart condition and doctors more often than not find it is gastric and not cardiac. Given that you suffer from GERD other things tend to go hand in hand with it such as Irritable Bowel Syndrome, Hiatus hernia (sliding or not)

      You could try raising the head of your bed several inches which prevents a sliding hiatus hernia from sliding up into the chest cavity and causing problems. I know several people who have complained of similar symptoms to you (worse in the afternoon) and it turned out to be a sliding hiatus hernia. If it is then it should show up on your endoscopy. In the meantime you could try eating little meals often rather than a big meal which would set off the symptoms.

      Cardiac sarcoidosis is thankfully rare  and if your sarcoidosis is going into or already in remission, then I would doubt that it has suddenly flared up in your heart. An echo-cardiogram should show any sarcoidosis in the heart.

      The body is a complex thing and no two people suffer exactly the same symptoms  when things go wrong. Gastrointestinal pain can be so severe it brings you to your knees. Little wonder why people think they are having a heart attack. When someone thinks this is happening it can set off a panic type situation and high stress levels and the body can react in the oddest ways so don't discount any of the symptoms as not being related to your GERD. You have to remember that the body in crisis can send the brain mixed signals. The body is experiencing severe pain and it's yelling at the brain to do something. The brain misinterprets what is wrong and sends the wrong hormone which in turn affects nerves and organs so before you know it your hands aren't working properly, you get a sudden severe headache, you sweat profusely etc etc and all this has happened because the brain misinterpreted the message for help.

      Sarcoid interference is continual until the sarcoid starts to go into remission. It doesn't stop and start symptoms in a day and  having read that your flare up happens every afternoon does not indicate sarcoidosis but does indicate a gastrointestinal problem.

      Sorry for the very long posting but I wanted you to try and understand how it could be linked to your GERD and I also wanted to try and ease the worry you are feeling. It is really good that they are doing an endoscopy because they are obviously thinking along the same lines as me so that is a good thing. Having said all that only tests can give you a final answer and diagnoses but in the meantime you need to try and calm down because regardless of what is wrong you are not helping it by getting so stressed.

      Kind regards,

      June

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    • Posted

      Thanks June , much appreciated.

      I will come back and post the findings of the specialist next week.

      the Gerd is quite severe as Ive had it for 20 years. sometimes the food wont fully pass in to the stomach.

      My doctors surgery is a nightmare its taken 6 appointments to get the endoscopy , even though they have a written history of my acid reflux.

      The symptoms are worrying and i guess when you have sarcoidosis you think anything is possible sad

       

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    • Posted

      Yes understandably it is worrying. I've had more than a few sleepless night worrying myself.

      It does sound like you have a narrowing of the oesophagus when you describe the food not always going into the stomach. Definitely you should be eating a small light diet but eating more frequently. I'm sure you already know to stay off all fatty foods or hard to digest things such as bananas, cheese, etc and to stay off spiced or overly salty foods and also acidy drinks. Be careful with chicken too. We used to always give chicken and fish to gastric patients but one consultant told me many years ago that chicken doesn't go down very well as it tends to form a bolus (large, hard to indigest, ball of food) in the gut. When you think about it he is right because the chicken meat (breast especially) is pretty stringy when you are chewing it.If you enjoy fish then stick with that and avoid meat and poultry for the time being. Gravies are often very fatty. The caffeine in coffee and tea can also cause acid reflux so cut down on intake.

      It sounds like you have a doctor's surgery like mine. I couldn't figure out why the patient who had been in front of me left the doctor's office with a look heavenwards. When I went in he was playing with the computer chair and saying that he wanted to get something nice! I sometimes think these doctors should steer clear of the medicine cabinet!!!!

      You must have felt like writing the letter to the specialist yourself. We have to wait for up to 12 weeks or more to see some specialists so the sooner they get the letter in the better. I hope he marked it urgent! It is pathetic they way the NHS behaves now and GPs especially. I bet if they were suffering they would get to see someone immediately.

       

      Best of luck and I will look out for your post.

      Kindest regards,

      June

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