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Lots of symptoms - ongoing for almost 8 years.

JP11
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Hi, I thought I'd come here because I feel I'm slowly losing my mind with worry and I just don't know what to do anymore. This is probably going to be a long post. I don't know who to talk to, but I always feel fobbed off when talking to Doctors. It doesn't help that I've had to change practices multiple times due to moving house, and I don't often see the same Doctor because it feels dangerous to put all of your trust in a single Doctor who may misdiagnose you.

- Firstly, this all started when I noticed problems with my bowels, around January 2011. I was only 18 at the time, but started noticing a change in my bowel movements. I didn't bother going to the Doctors at the time, but my bowel movements seemed looser than normal. I actually still have these symptoms, and have persistently worried about them. Fast forward to around August 2011. I went to the Doctors because it was starting to bother me and I was worried. In my visit, I got told I was young and it was probably IBS, and nothing more was done. I've been to the Doctors various times since then about this. More recently, I have episodes where I get a lot of discomfort in my bowel, or going to the toilet. I was able to have a flexible sigmoidoscopy done in May 2017, which all came back normal. I had a full colonoscopy done last month, due to my symptoms getting progressively worse, which all came back normal - with the exception that my bowels spasmed during the procedure, which would suggest IBS. So I think I can rule out having bowel cancer.

- In August 2011, I noticed what felt like a lump in the left hand side just under my jaw/at the side of my throat. So, a short time later, I went to the Doctors. Finding a lump was very concerning for me. I was told it was probably just an enlarged lymph node, people get them all the time, and they stay around for years. Again, this lump is still there, and has been for around 7 years. I feel like it's changed a bit in that time, but it's not grown significantly, at least not on the exterior.

It feels like since then, things have slowly spiralled out of control. These two symptoms were my initial health scare. Since then, to me it feels like my health is slowly declining. From around August 2011 to mid 2013, I didn't notice anything new. My symptoms just persisted. But I visited my Doctors a few times, but was never referred for further tests because they never felt like anything was wrong.

-Towards the end of 2013, I started having problems with my swallowing. Sometime around 2013, I also felt like I was starting to notice things growing around muscles and bones in my body, and what seemed like some new lumps on the other side of my jaw/neck. I saw a few different Doctors but the general response was always that I was worrying over nothing. After going to the Doctors about the lumps I could feel in my neck, I was referred to an ENT, who told me it 'could be cancer' and I was referred for an ultrasound. But that all came back normal.

I was referred for another ultrasound towards the start of 2018, due to noticing what felt like another lump in the side of my face, around where the end of the jaw is. It felt like a lump in a muscle, and it feels like it's slowly grown over time, but not significantly. This ultrasound of the area again came back normal.

- Early 2014, I noticed what felt like on the right side of my skull, a lump was forming around the temple area. Since then (it's been 5 years), it feels like more lumps have started to form on my skull. It started at that lump on the temple, and feels like it's spread to other parts of my skull, most noticeably on the right hand side. I started noticing my right skull slowly bulging out due to the various different lumps on that side, which seemed to appear one after the other. Whenever I go to the Doctors about this, I'm told they can't really feel anything. But I'm sure I can feel lumps, and that they've very slowly grown over time. What I don't know is if it could be cancer. Maybe they're very low grading and hence the Doctors don't realize it's cancer, because they're slow growing. And maybe they're growing inwards, causing neurological problems (more on this later), so maybe they haven't noticed how big they are. 

I talked about the right hand side of my skull, but it feels like the same process is starting to occur on the left hand of my skull, starting about 2 years ago (late 2016) and going the same way as the right hand side. A lump starting on the temple, and then slowly spreading to form more lumps around the left hand side of the skull. Does this sound like it could be cancer?

- It's hard to describe, but it felt like I had fatty tendrils wrapping around bones in my body, especially my collar bones and rib cage, but now I feel this all over my body, in my legs, etc. I went to my Doctors about this towards the end of 2014 just resulted in me being told they can't feel anything when showing them what I felt around my collar bones/shoulder bones. I was also noticing lots of smaller lumps in other places in my body. I could feel small lumps in the fatty tissue on top of my bicep. Since then, I feel like I can feel those small lumps all over my body, in collections of fatty tissue and on top of bones. It feels like the ones in my bicep have slowly spread out over the area over time, and I can feel lots of small lumps just all over. But not many of them really appear THAT big. Whenever I've showed Doctors what I can feel in my biceps, I just get told they're lipomas, but lipomas shouldn't spread out and feel irregular in shape?

- Around April 2016, I started to noticing weird issues with my breathing. It felt like on the right hand side, when I tried to take a deep breath, I was physically unable to do so - like something was restricting my breathing. I found that this feeling was more prominent when standing - when sitting down, I don't appear to have this issue, except maybe for a few hours every so often (could be related to what I've eaten/gas trapped?). I've been to the Doctors a few times about this - I had a spirometry test done in Summer 2016, which came back normal. I had a chest X Ray in December 2017 which came back normal. I've talked to my Doctors recently about this, and have just been told they don't thing there's anything wrong, because of the results of the chest x-ray. I suggested because I've had growths around my bones and what feels like lumps in my skull that maybe my rib cage is restricting my breathing on that side, but I was dismissed. It feels to me like my right hand side rib cage is more 'swollen up' and prominent than the left hand side, in the same way the right hand side of my skull is.

- Around Summer 2016, while out one day, I started to feel like I was having twitches in my neck that I couldn't control. I thought it was nothing, but since then it feels like the twitches have got progressively worse. Originally I noticed it in just my neck muscles, that they'd twitch randomly, sometimes quite violently. I always felt embarassed when this happened when talking to people. As I said though, it feels like it's progressively gotten worse. It feels like other parts of my body are now suffering from random twitches, most noticeably my jaw will twitch while eating or talking, causing me to bite my tongue or mess up when trying to say a word. I also feel like I'm becoming more forgetful, struggling to recall words or names that I should remember, and getting my words mixed up a lot when typing. Though, this comes and goes... for example, I've typed all of this out without any issue. Could all this just be down to stress? Whenever I've talked to my Doctors about this, they don't seem concerned.

- I mentioned feeling lots of lumps all over my body. Towards the end of 2015, I noticed what felt like a significant lump growing in the cord attached to my testicles, not on the testicle itself (I believe this is the vans deferens). I've been to the Doctors A LOT about this, and normally they say they can't feel it, or it's part of my normal anatomy, or they feel something but it doesn't seem worrying. I've had 4 ultrasounds of this, and all have come back normal. But I'm worried that my lump is being missed, due to it being 'relatively small' (it feels at least a few cms in length to me, and maybe 1cm across) and by the fact it moves about. I've been booked in for a 5th ultrasound after seeing my Doctor last week. It feels like it's slowly grown bigger over time, but I should maybe be reassured by the fact it's never shown on an ultrasound and Doctors never seem able to feel it - though I have all the time in the world to feel it, while they spend a minute tops, can't find it, and hence dismiss it.

 

If you're reading this still, any advice would be much appreciated. I feel like I'm going sick with worry. I feel frustrated that nothing more has been done other than some ultrasounds, a handful of blood tests, an x ray and a colonscopy. No biopsies or more detailed imaging has ever been done. I'm not sure if it's just because I'm a fairly timid person that I don't get the results I want. I feel like having an MRI would answer a lot of questions and give much more detailed pictures of areas of my body I'm particularly worried about, but don't want to waste anyone's time also. And whenever I've even mentioned the possibility to Doctors I've been quickly shot down. It also doesn't help that I have so many symptoms, it's hard to talk to a Doctor about them all. I can maybe talk about one symptom per appointment before my time is up, and there's so much going on here.

 

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    Hi, I can sense from your post that your are extremely anxious that something is not right, and that despite all the tests, you are convinced there is something sinister going on.

    i am not medically trained and cannot offer any medical advice. However, I do know that stress in itself , especially long term stress, needs an outlet. It’s your body’s way of telling you to ease up. 

    If it were me, I would first of all decide on a gp to see regularly, that way you build up a relationship, and I genuinely believe that seeing a regular gp helps them understand your problems.

    then, I would write a list, brief, but to the point, of the things you have written in your post. Take this to your gp, tell him how very distressed you are. It is likely that he will tell you that you have had all these scans and tests, and everything has come back normal. Then you are able to discuss with him why you are feeling so anxious.

    have you experienced any trauma over these past years ? Can you think of a possible trigger that might set off such feelings ? Our bodies are extremely clever, and our brain will find a way of letting us know all is not right, but more often than not, it is not a physical problem.

    let us know how you get on x

  • Offline in reply to Bumblebee99

    I think this will probably help (writing a list), and I have tried it in the past, but it's a lot of information to digest in one appointment. I just get the feeling with certain doctors that when I see them on a regular basis, they'll get annoyed. I've got this feeling in the past when I've seen them about something, they've reassured me nothing is wrong, then I've gone back to them with the same issue. But I think you're right in that seeing many different doctors probably won't help. But at the same time, I'm thinking - I've had these issues for so long. I've made so many appointments. I just need to find one doctor who knows what they're doing and then I'll get the tests that I need. There's definitely some anxiety involved in that I don't trust most of my doctors, but at the same time, to me my symptoms seem to so obviously indicate something is wrong, I do find it hard to trust their opinions.

     

    Not experienced any trauma. It all just started almost 8 years ago now, when I noticed the lump that's been put down to a swollen lymph node - and combining that with my bowel symptoms (which has now been diagnosed as IBS after my colonoscopy). My nan died of cancer in mid 2012, but this was way after I started worrying about my symptoms. She was a heavy smoker anyway, so there was at least an obvious cause for it in her case. For me, I'm 'young' - only 26. And yet I feel like that's part of the problem. Doctors have often told me because I'm young, I shouldn't worry about this - but young people get cancer too...

     

    I'll keep you updated, but I don't imagine much will change soon, unfortunately. If I do have cancer, then I've missed the chance to catch it early a long time ago. 

  • Offline in reply to JP11

    Hi,

    i also can sense your anxiety. I write this from experience of also suffering with health anxiety, however once I got normal results it did tend to subside. You have absolutely done the right things in getting checked..... a colonoscopy is the gold standard for bowel screening!

    i am not medically trained and I am going to quote what my gastroentologist said to me. I was worried about symptoms persisting for 3-4 years and she told me I would absolutely know about it by now. 

    Make a list, see your gp and talk over things. Stress and anxiety can actually make you ill - so try to address the root cause. 

    Best.

    C

     

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