Don’t know where to go from here

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Hi
I’m new to the site and honestly need someone to talk to although not really sure what if anything people can advise.

Bit of background, health wise no real history of any issues, generally quite healthy. However many years ago I lost my sister to adrenal cancer she was 32. Then lost both parents to cancer in 2 years (2017/18) and then a brother to suicide (2019) . Also in 2016 I took custody of an 8 year old niece and 6 year old nephew. So a particularly stressful 8 years.

In 2019 I did develop an awful health anxiety, not that I always thought there was something wrong with me but if at anytime I was ill I would immediately think the worse.
I spoke to my doctor about this as I did recognise that is was an issue. Doctor said it was entirely reasonable given the losses I had experienced. I saw a therapist for about 6 months and that really helped.

However. I began to notice that my doctor then started treating me differently on the occasions that I did attend the surgery over the next 3 years (which was about 4 times) I’d notice he would refer to the health anxiety. I presented to him in 2020 with insomnia, mood swings , extreme fatigue and he basically said it was anxiety. Because he made me feel I was imagining it I made another appointment the next week with a different doctor who did hormone tests and declared me menopausal. So much for anxiety eh?
I hadn’t gone to the doctor since 2020 until April 2023 when I started having abdominal problems, and real sharp pain in my ovaries area and constipation issues. doctor tried brushing it off as women’s problems as I’m 50 years old. He sent of bloods which came back with several raised results specifically ca125 levels were raised (could indicate ovarian cancer) scans ruled this out. Something else was raised but can’t for the life of me recall the name but indicated liver issues (a scan revealed simple spots in liver that are apparently common but not worrying) and 3 separate urine tests showed red blood cells, and a bladder scope showed no issues there. But I still felt ill. At the same time this was all going on I started having trouble swallowing, not choking but having to forcefully swallow food down. But I didn’t want to mention it to the doctor incase he was thinking oh here we go complaining of something else. In relation to the abdominal issues the doctor referred me to gastro but I’ve yet to get an appointment.

In September 2023 had a week where the swallowing was really problematic and now I also had neck pain and mild earache so went to A&E and they kindly got me a ENT appointment for the next day. An endoscopy showed nothing grim but they said there was slight swelling and they thought it could be DISH disease. A CT scan was needed and that would be a wait of 4/5 weeks.

Since September I have also had twitch/ vibration on the right side of my face and several times when I’ve gone to turn around I’ve lost my balance. I also have like electrical jolts in my right foot but only at night. In November I woke up with numb lips very odd sensation, it was just for that one day I haven’t had it since but the facial twitch thing is still there.
Other symptoms (but these have only happened 2 or 3 times in the last few months and only again for a day was very odd eye activity. Say I’m looking at the window and then I look at the door it was like my eyes took a second to get to the door if that makes sense? Same when reading the start of a sentence my eyes will just “jump” to the end of the sentence.
Also fatigue there’s days I don’t even want to get out of bed. I do obviously but I’ve constantly zero energy.

So by December I had heard nothing about the CT scan appointment so I rang the hospital for an update. There was no update the referal had not been made and no one seemed to know where the notes were from my September visit. They were apologetic (big of them considering I’d been sat 3 months waiting) and they asked me to go back in last week for the endoscopy again. They still say there’s nothing suspicious other than my throat is on the narrow side but because the swallowing and neck discomfort is still an issue I’m to go back on Friday to see consultant on what to do next.

The more I think about it the more I’m wondering if this is not a “throat” problem but a neurological problem. But I’m anxious about mentioning the other symptoms for the fear of them pulling the health anxiety card on me. And even if I do mention it would the ENT consultant be the person to mention it to? I do not want to go back to the doctors.

I know my body and I have not felt “well” for nearly a year . I just don’t know what to do next

I know this was a novel. If you got to the end thanks for reading

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Well I honestly don’t think I’ve heard such a sad story, a lot of loss for one person to go through. Bless you! Regards to your symptoms and health, go with your gut. Like you say you know your body and know it doesn’t feel right. If I’d listened to my doctor I’d still be getting steroid injections in my knee when there wasn’t actually anything wrong with it. Hope everything works out for you and please keep us updated. Take care, Angie❤️

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I am sorry that you are finding it hard to be properly heard by the medics. I’m afraid this is not unusual. Maybe particularly for us ladies of a certain age, and that can go with bells on when there’s health anxiety in the notes. It’s bad when a perfectly normal response to an unimaginably grim set of circs can come back to bite you years later, or at least cause more of a question mark to hang over your case than might otherwise have hung. Don’t despair, be patient but be persistent. Please let us know how you’re getting on.

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Aww rather a rough round by the sound of it all encompassing. I’m very sorry for all your troubles and more than anything I hope you’ll be alright, even if it is a fickle easy thing to say from all the way over here.
You at least mention quite a lot of different things that have piles of different entirely imaginable medical reasons for your ailments, and well, my mother who isn’t so young anymore and also has her own fair share of medical issues has for years similarly complained of being brushes off a little too easily at times despite what might seem like entirely fair worries due to the way the system works and well the whims of the given doctor.
Err by which I mean to say you at least don’t need to be hard on yourself or doubt yourself, and you are certainly not alone in many of your struggles if however particularly struck by misfortune you poor thing.
You are at least sure to find several very understanding ears and voices here, a few I see have already reached out a little bit. So talk as much as you want to as many of us as you’d like, we’re all here and we hear you. We’re plenty used to wading through the sea of the various medical systems with our torrent of varied symptoms and struggles to be properly heard and seen. No-one’ll brush you off here.
A bunch of your issues can indeed possibly be linked to issues in the spine, both physical and neurological so nothing to do but keep looking and crossing out with [nope, not that one either] patiently. Often a fair amount of persistent insistence is necessary to keep moving forward and be handled properly.
To make a proper conclusion, as much as possible symptoms stacked together make it easier to make an informed decision. Busy doctors especially look for the most obvious common factors and point to the most likely as fast as possible I often feel at least, so while I understand your concerns about being brushed off if you mentioned too much, it is also very possible that that the doctor is missing one particular thing to make your more encompassing diagnosis with a little more confidence, or at least point you at the right checkups.
Generally being consistent is also good for giving the doctor more confidence, so be careful not to explain the symptoms too airy if you can.
Have you been able to get an MRI? That could check for many neurological issues at least so that you can get that out of the way at least.

I’m just a random guy so I’m sorry for not being able to answer your questions better, but I do hope you can work your way through this. Shout out all you have to when it gets a tad rough for you!

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Thank you Alison for your reply and taking the time to read my post. Yes I do regret mentioning my health anxiety as it feels like a shadow every time I go to the doctors. I now do not feel comfortable going there but then feel if I don’t and something is wrong…. It’s a vicious circle :roll_eyes:

I did post a little update to another kind responder on my post, I am now awaiting mri of the head a neck so fingers crossed there will be a resolution in one way or another.

Thanks again for your reply

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Thank you little one for your response and the fact you took the time to read it.
I had my appointment with ENT on Friday this time I got an actual consultant (the last 2 scopes were with junior doctors who themselves said they had limitations reading the results) unfortunately I had to have yet another endoscopy as the last junior doctor had not recorded it.

The consultant said he could see that I had lingual tonsil hypertrophy ( who knew we even had 2 sets of tonsils?) I’d had my “normal “ tonsils removed when I was 26. But she said she needed to investigate why they were enlarged and is referring for urgent neck mri.

I mentioned all the other bizarre symptoms and she said I was right to do so and said she will also refer for urgent head mri too.

So I’m kind of relieved that her finding something proves it’s not all in my head, but still anxious as to what. Old be causing all this but time will tell at least things are actually being done to try and figure it out.

I will indeed post an update:)

Thanks for your message I hope this response finds you well

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Well it finally looks like you are getting somewhere, it only takes one consultant to realise that actually this needs further attention.
I was being seen by an orthopaedic surgeon about my knee, he took one look at the way I was walking and referred me for an urgent head/spine mri and here I am. Keep us updated, we are all here for each other good and bad days, take care. Angie :heart:

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