still as baffled despite seeing ct scan

I am 57 years old female. I felt ill from age 28, gradually getting worse. had an array of symptoms, suspected colitis, fatigue, bells palsy, migraines, dizziness, back pain, neck pain, ear pain, congestion, trouble walking. Sometimes I felt I couldn't talk properly and tried to come across as normal. I had xray and found to have mild arthritis in neck and spine and also congenital dislocated hip, I was told to not do so much. I also got a lot of chest tightness and was given inhalers. I had blood tests, all negative except for low iron , abnormally shaped blood cells. I got to see ENT, neurology,rheumatology. I was dx with fibromyalgia when I was 42. I had eye problems, an optician wanted an urgent referral to orphamologist, but gp vetoed it. The relationship I have had with many medics has been mixed, age 50 I was diagnosed with ehler danlos syndrome type 3. I had hysterectomy aged 47, and had unstable angina and acs dx, though arteries were fine. I have had severe vertigo and my facial appearance changes when I am worse than usual, swelling ,with sunken eyes, at times lost a lot of weight, no appetite, have congenital hiatus hernia, the endocopy caused oesophogitis. One gp said all my blood tests were fine, I hada chemical imbalance in my brain and needed anti-depressants. There has been such a lot of different things ,from age 38 it really went downhill and by age 41 impossible to work. I use a wheelchair as my hip and spine hurt a lot and generally my balance is not good. one physio even thought I might have ataxia. this march I was sent for cardiac ct scan, heart se ok, but there were these enlarged nodes on my lungs, I was never feeling well, and felt I wasnot going to be around much longer. had another ct scan 3 months later showing the nodes were now moderately enlarged. went to see respirastory doctor who asked if I kept birds. Biopsy is on the cards, but worried as because of previous experience, worried about adverse affects and a lot of pain. have had 3rd scan couple of days ago, going for lung functions test soon. I have had ace blood tests which are fine. I think sometimes I am going to go blind or have a stroke. I had a breathing attack the other day, used inhaler but was wheezing all day, and trying to get breath. have had a bad migraine or three days, felt better when a load of rubbish came off my chest. still feeling exhausted. sometimes feel like I have been punched in upper abdomen which keeps me awake, I take morphine for that pain. don't know where this is all going, it is not fair on me or my family. at least I can write this today, as a lot of the time I cant because of pain and painful fingers,wrists arms.

12 Replies

  • You've been through so much. I'm so sorry.

    They said I'm allergic to birds and bird pooh and ask me if I have or work with birds.

    I hope and pray they are able to help you to feel better and get better.

    Most sincere.

  • thankyou for your kind words. it is strange about the birds. I dont know about you just get so tired all the time, especially early evening ,sleep does not help feel rally out of it, and dont feel right at all. have happy times though, racking my brains about the birds though at the moment have bronchial complaint, felt awful for a few days then got a lot of rubbish off my chest, its still there but loosening up. going for a lung function test at the hospital on the 4th november had one done 10 years back , they said I had lungs of a 68 year old,was 47 at the time. do you have this ? I had steriods prescibed once, felt great whilst on them, not afterwards though. I just cant see how any medication will help. use inhalers when I cant breathe and struggle but feel really shakey afterwards. hope you are feeling well.

  • Wow....that's so scary hearing that your lungs are much older than you are. You are so very young to be so ill and again I am so sorry. Are you not on any medication for the sarcoidosis ? I was on 7 milligrams of prednisone but it was not working and the granulomas were growing in my lungs and everywhere else so we bumped it up to 15 milligrams of prednisone a day. Makes me rushy but it seems to be helping my lungs a little more. I went from two small granulomas in the lungs to 5 and the two small ones had grown. It's in my lungs liver spleen nodes and I'm not really sure where else I think maybe my stomach. Good luck with your pulmonary function test. They are thinking about starting me on Plaquenil along with prednisone or switching to methotrexate next appointment which is in a few months....after Christmas. The fatigue just attacks me every now and then and puts me to sleep for about a day or two and then I'm back again. It used to be before the prednisone and that I could not get off of the couch or out of the bed. I am so very thankful for the prednisone. I'm not sure what I will do when they stop it but for now my doctor does not seem to think that I need to stop it he thinks that I need to be taking it or increase it. It makes me very hungry for pastries ;-)

    Yes it is quite strange about the birds LOL

    Try and let me know if you're on any medication I'm just curious what you are taking that is not helping you to feel better.

    Most sincere good wishes. Jackie

  • I have not had definite diagnosis as not had biopsy done as yet. I have ehler danlos syndrome hypermobility ,hiatus hernia, osteoarthritis, dislocated hip. always bronchitis, even when little and asthma. have had a lot going on but at times doctors have been a bit sceptical. even to myself it sounds far fetched. I have been diagnosed with acute coronary syndrome and unstable angina, yet scans showed arteries are fine. have migraines with aura, vertigo,eye problems,going red and not seeing properly, sinus problems, skin problems to the point the dematologist said I had basal cell carcinoma, had biopsy and it was big, bleeding a lot but not cancerous. I am on inhalers, cocodamol, anti biotic creams and drops. also have glyceril trinitrate spray for angina. my gp sent me to have cardiac ct scan in march and for the first time that is when I was told had enlarged mediastinal and hilar lymph nodes with pulmonary fissural nodules. had another ct scan 3 months later,my blood test was fine but nodes had got moderately larger. then respiratory doctor said about having biopsy done, I have had endoscopies done in the past for hernia and oesopagitus, it was not pleasant and caused bleeding internally. I am worried about having biopsy because of ehler danlos syndrome which is a connective tissue disorder. I cant take anti inflammatories and different medications because of very adverse side affects. my gp said i need to have biosy done so I can get treatment . waiting for result of 3rd ct scan, think it is still there as my chest is tight and feel breathless a lot. I get pain in my ankles ,thinking it was arthritis, I dont know. have found out that having a hernia can cause bronchial and lung problems. I do feel at times that this is really serious but have felt unwell for so long ,not been able to work for last several years. my mum was always prescribed inhalers and anti depressants ,she died aged 61, it was heart disease and pulmonary disease, yet when alie she was having tests done for stomach issues, if my blood test is fine, do they put you on predlisone ? also another thing feel constantly thirsty, more so than hungry. if I did have sterids would it stop the tiredness and miraines/auras ? many thanks for your interest, I gather people are affected differently and also different reasons ? I am 57 now, feel this is how i am, my gp said it goes beyond his paygrade. I think I may have neuro sarcoidosis, but not sure as I thought everything was down to the ehler danlos syndrome which is a mimic of many conditions, their logo is a zebra, the stripes represent the many different aspects of ehler danlos syndrome.

  • Ahhhhh. The ZEBRA. I've heard sarc referred to as that. Oh my goodness you poor thing. I feel so bad for you. If you can't take antiflammatories...than I guess you would need something else ...but they have to try something :( So many health care systems are so broken! It's so upsetting. Are you in USA? I've not heard of what you may have. I'm new at my diagnosis about a year and half. Prednisone is good and bad but right now it's helped me so much. I've been so fortunate to get into Johns Hopkins Sarcoidosis Clinic. It took me almost a year and now the knowledgeable doctor is retiring soon. I wish and hope and pray they find a way to help you. Please don't give up. Can you find a different doctor? Rheumatologist? Neurologist?

  • I live in the UK. I was under a rheumatologist but she left open appointment and said if I get any new symptoms she would see me again. My son is waiting to see her now, as he has ehler danlos syndrome , we take codeine and paracetamol, use antibiotic cream for skin problems and eye problems. my daughter is 17, she is under birmingham childrens hospital, she is under haematologist and cardiologist, going through transisition into adult sevices and going to rare diseases centre, all her coditions will be kept under one department. She has low platelets and takes tranamexic acid and desmopressin when she bleeds or bruises. she also has ascending aorta dilation, its congenital, she has no treatment,it is not needed, just regular followup and scans, she has to make sure to not get drunk, party to much ,all things we worry our teens do anyway. I think all of this is connected, respiratory doctor has not ruled it out. there are many people with all different things who never get diagnosed, ill a lot and never know what is wrong with them. I had read about sarcoidosis in the past and thought I might have it, but hard to know. when I read about people who are feeling ill and they are told it is stress, think that is wrong. A person can tell when they are well and when they are not. Where do you live ? we are fortunate having the nhs, but it is worrying in the UK that the nhs will be no more and healthcare will be privatised. ope did see neurologist years ago, he did not do any tests, just said sounded like I had migraine or possibly epilepsy. gave me pizofiten, which made me sleep all the while. The less meds I can take the better, yet if I thought there was anything to make a real difference I would take it.

  • I feel for you. We all know our bodies and know when something'sis not quite right. I realise that I was lucky that a growth developed on my arm and was diagnosed as a granulomatous inflammation which made sense to doctors with all the other symptoms I had been suffering from for over 18 years. I am beeing treated now with prednisolone ( not without side effects ) and will be checked for the rest of my life. I have answers now to my chronic fatigue , my body aching all over , severe caughing, joint pains, feeling low ,painful eyes, redness on my facial skin , after nine months of treatment , I look forward to the medication being adjusted rightly to make the difference of having a better quality of life in the future. Hope you eventually get diagnosed with your ailments and helped.

  • Hi. Just to let you know that keeping birds or gold fish can give type of illness which resembles sarcoidosis symptoms. So some tests can be carried out to eliminate that possibility Hope that make sense.

  • Thank you Marie-Helene :)

  • I'm sorry it's taking me so long. I guess I'm having a flare. I'm so tired and don't feel well. Oh no ....your babies are sick too. My Son is too but they can't treat what they can't diagnose. He is in do much pain and feels like he is dying. I feel helpless. I hope they help you and your babies. I'm in USA.

    I think stress activates health issues and makes them worse. I've been under extreme stress most of my life. Ugh.

    Hope we all feel better :)



  • thankyou for your reply, it is really nice , sorry about your son and the pain is in. I have not been good today,like you just feel so tired and it feels like I am to blame for being like this, my skin has flared up. eyes been hurting,get visual problems, and feel like little things are bursting in my eye. On a good note my 17 year old daughter passed her driving test today.I am going for tests on Friday for lung function. I have a spirometer at home , get 250 on a good day and about 150 on a bad day. I gather this is good compared to people with lung problems. Also started topiramate today, to help with migraine and facepain. Each day is a new day, I like little things like hearing birds sing, stars at night and reading a good book. I am reading a book called Tis by frank McCourt, it is so funny and makes me laugh. Just finished his first book Angelas ashes. I also enjoyed reading nelson mandelas long road to freedom. One day I think I would like to try and write a short story. Yes let us hope tomorrow will be a better day xx Christina

  • Hi Christina.

    Thank you for your sorrow for my son's pain. Congrats for your daughter passing her driving test!!! I'm so sorry for all that you are going through. I too like hearing birds and stars at night. I love furry friends and I have 6 kitties and a little dog. I love watching the deer and wildlife, I also love a hot bath and I don't like to read ;) I'm more visual. It's so nice when you can enjoy reading because it does take you to another place. You should write your short story! I sure hope you are feeling a little better since last you wrote. I do know it's a daily struggle. Take good care of you Christina.