Apologies for long explanation but this has been on going for several years.
It all started 7 years ago (age 21) and I collapsed, I had slurred speech, confusion, muscle weakness and not much memory of the week to follow. I was admitted for a few days and was told I'd had a virus. I didn't ever fully recover from this so went to the gp who referred me to the endocrine team as I had, fatigue, muscle weakness, foggy brain, slurred speech and my vision was affected. They carried out tests on my thyroid and found a small nodule, they had said my function was normal but could see changes happening and I would suffer in the future. They Decided I had ME/chronic fatigue syndrome and told me there was nothing they could do for me!
After being such an active outgoing person I found it hard to adjust especially as I received no help. Eventually I was put threw physio to help build up the muscles in my legs which helped considerably but even today my muscles struggle to hold the strength in my legs. I adjusted my life style and started listening to my body. after a couple of years I eventually managed to get back to full hours at work and nearly a symptom free life. (But always suffered with colds and infections)! As each month went by I was getting stronger and stronger and decided I would start running short distances again of which I was able to do so.
About 3 years ago (24) I went for a run and started to feel a severe burning sensation in my throat and chest, I thought nothing of it went home and slept it off. Over the next few days I started to feel unwell and had constant heartburn, it got so severe I struggled eating and drinking! Palpitations but didn't feel nervous or anxious , shortness of breath when walking ad my period became heavy, painful and lots of clots, I also became intolerant to temperates and had excessive sweating! I became intolerant to certain foods, tomatoes, chocolate, caffeine, fruit etc. eventually they sent me for a endoscopy which showed my espohagaus was covered in yellowish legions, and a biopsy was taken. I went to my surgery for results and was told I had candida, they gave me a course of nystatin which didn't work they then gave me a two week course of fluconazole of which I started to feel better and eventually returned to work after two months off. I how ever was still unable to exercise due to the burning sensation on exertion. After 3 months back at work I started to go down hill again and started feeling the exact same symptoms again, so they put me straight back onto the course of fluconazole, my symptoms were alleviated. Over the year this happened roughly around every 3 months, and with my frustration with the inability to exercise I wanted further tests.
I eventually saw another specislist who said there was no way I would of had candida and it must be in my head, as it had been a year since the last endoscope I begged him to do another one, he eventually agreed and to his shock there were the yellowish legions covering my esophagus, so he took a biopsy! The results for candida were negative and he was at a loss. Again for several months I went back to my gp wanting to be able to exercise again, they then sent me to another specialist who looked at all my notes and said that my first biopsy had come back negative for candida and my doctor should never have prescribed anti fungals. He carried out another biopsy and decided that It was sebateous glands covering my espohagaus and it shouldnt cause any symptoms and so maybe my gp should look at the bigger picture. This was ignored
Cut a long story short I have seen
Internal camera to check my ovaries
2 x heart speclalists - 8 nodules were found on MRI scan in both lower chambers in both lungs.
Chest specialist - requested ct scan and biopsy of nodules, two weeks between MRI results and CT scan I had started to feel unwell so took the course of fluconazole. On the day of the biopsy the specislist stood at end off my bed and said they've gone, he was so shocked he wanted to continue with the camera into my lung, where he didn't find any nodules. He then asked me was I unwell when I had MRI I said I had took the tablets between the two scan. He then agreed to scan 3 months later but they hadn't returned.
Rheumatologist - wants to put cortasoin injections into my chest (tomorrow) to help see if it will alleviate pain on exertion.
My doctors have now stopped given me the tablets and I am into the 4 half month mark and I have been off for two weeks as too ill to work! I have had one suggestion that on average receive around 4/5 coursescof antibiotics a year due to infections and have been told that this could be why the fluconazole works. And when I thought about it I roughly take the antibiotics every 3 months and within two weeks I'm on a course of fluconazole, but I don't know how possible this is.
I am feeling utter frustration that I am just being sent for the same tests over and over again ( not pleasant ones at that) and I feel they are not looking at the bigger picture, I know sebateous glands in esophagus seem to be really rare and there is not much information about it. I definately feel there is an underlying problem that is being missed. I wonder if I maybe have an auto immune disorder, or could it be a problem with my thyroid. I am at an absolute loss, i am 28 and just want to get well get exercising and get back to work as I am at risking of loosing a job I love. I am tired of being told I am depressed when I am far from it I am just frustrated at the lack of support I am receiving!!
Any help would be gratefully received