Undiagnosed and afraid to go to a&e

Other conditions
1

Although I've been suffering from something unknown for several months, I only realised it about two months ago when things got worse.

I'd been waking up in a state of confusion for several months, but this would pass within an hour or two, and I just thought I was having difficulty waking up properly. As time went on, this confusion started lasting all day disappearing as late as 11pm. I'd also been getting exhausted to an extent I've not experienced before, and various other symptoms such as tingling in hands, arms and feet, pain in my left eye extending down my neck, and sometimes starting in the right eye before shifting to the left.

One particular day the confusion was immense and I felt frantic, so I went to a&e but the doctor was extremely rude to me and sent me home without any questions or examination. I was not at that time registered with a doctor in my local area, having recently moved.

Signing up with a doctor proved difficult especially as little things just made my confusion worse, and having to wait two weeks to see a nurse before being able to book an appointment to see a doctor was enough to send me into deepest confusion.

Anyway, went to see my old doctor who agreed to see me this once and who took blood samples, urine and stool samples, but said she would have to forward them to my new doctor.

Finally got a new doctor and explained all my symptoms, and she suggested that my sleep problems were causing my physical problems, and put me on anti-depressants. I only took one and suffered hallucinations and nose bleeds so stopped them and went back. My blood results had come through but only showed high cholesterol, and my doctor substituted the anti-depressants for sleeping tablets, gave me pain killers and cholestorol tablets, and booked me in to see a specialist about sleep and memory problems.

Over the next week i experienced all sorts of problems such as the ones already mentioned and other odd things like cramps, numbness on occasion and breathlessness.

The week after that (the last 7 days) was quite a good one for me, I relaxed a lot and took things easy until thursday when I went to help a friend move home.

On Friday, I was in a terrible state again with the pain in my neck and eye and confusion, but I also noticed that this seems to stem from a lump on the back of my head, left side bottom.

Friday night, saturday morning was absolute hell for me, I could hardly sleep, this confusion is hard to describe, it's not exactly a pain, it's ringing in my head, it feels as if I'm battling through a blizzard with wind driving snow and hail into my face, it's a sickly feeling in my stomach.

My entire neck was burning and there seemed to be little papitations which made my head go cold. As I went into a deep sleep, I was still conscious and it felt as if I had a tens machine connected at full power to my brain.

Today has been no better and I've had to sleep a lot, but now as the night is here the confusion and irritability is back, sickly feeling in my stomach again, general feeling of unwellness, though hard to describe in what way. Also, the eye and neck pain shifted to the right, with the pain seeming to eminate from a smaller lump at the back of head on the right,  (i think it's supposed to be there) then shifted back to the left.

I'm currently quite distressed but afraid to go to a&e after the rudeness I experienced last time. Just don't know what to do, and can't understand why my doctor has not even given me a physical examination, but has boooked me in for memory and sleep problems?

What on earth can I do right now becuase this is causing me so much distress?

The lump on the left side of my head is quite large and seems to be the cuase of the problem, but I can't be sure.

2

You didn't say how old you are.

The lump on the side of your head could be a cyst.

They will probably take the easy way out and tell you that your move has caused you to have anxiety and depression.

3

Derek76: Yes sorry I forgot, I'm 52 years old. I've been thinking it's a cyst and if so then I'm not particularly worried, but does a cyst cause such distress?

4

A cyst would not cause your other symptoms but you probably just became aware of it at the same time. You should get it checked out. My wife had one on her chest that she would not do anything about and it eventually became infected and took months of antibiotics and surgery to remove it.

Your other symptoms could presumably be caused by many things. They say divorce, death of a loved one and moving house are the greatest causes of stress and anxiety. That can then cause a viscous circle of events. Hope that you get some help very soon. The main problem with the NHs is that diagnosis is so slow.

5

Get back to your GP and ask to see a specialist.  Don't be afraid of rudeness, in my experience the rudeness comes from not having any answers for you.  Docs are used to knowing everything.  Be assertive, this is your life not his, you have to live everyday in your body and you know it best!   The very least your GP should do is order some xrays, a cat scan or an MRI of your head and neck to determine the nature of that lump.  Your symptoms sound neurological in nature or related to the inner ear. Could be nothing or it could be a virus.  Take care of yourself, being stressed about this can only make things worse.  Easier said than done, I know, but try.  Good Luck!!

6

Are you in the UK?

GP's in England cannot send patients for CT or MRI scans. They first have to refer you to a consultant.

7

Yes, I realize that, it is the same here in Canada.  I began my post with get to your GP and get a referral to a specialist, although your GP can order an Xray.  Sorry for the confusion.

8

Rose and Derek, thanks for your replies. Whatever this is, it's getting worse, but at least it's a bit more specific now. It's constant whistling in head, neck/headaches (but odd aches, not a traditional type headache, I'd relate it more to a nerve pain).

On top of that is constant tiredness, and if the tiredness goes, it comes back the moment I try to apply myself physically or mentally to anything...i.e writing this is a struggle.

Lastly, there's the stomach /side paid. This is so similar to the pain I get from IBS, but stronger and again as if it's caused by a nerve. Often accompanied by a sickly feeling in stomach.

Now I'm wondering if anyone could advise on the way my doctor has been dealing with this.

I'm recently registered, so don't really know her, and from wat I understand she's a locum. On my first visit she prescribed anti-depressants even though I told her I'm normally cheerful except when I'm incapacitated for several days in a row. She said they would help me sleep and lift my moood, but they didn't in fact they gave me hallucinations, nosebleeds and made me feel worse, I stopped taking them.

The second visit, she said she'd refer me to a specialist, and gave me a sick note stating 'memory problems and tiredness' no mention of the pain.

Third visit, I pointed out the lump and she has now referred me for a scan, both of the lump and the stomach.

Where I'm confused is...she seems to convert everything I say into a psychological problem. For example, I experience immense discomfort from this pain and she writes down memory problems. I told her it's as if there's a tightening around my brain, and she writes down 'thinks he has a problem with his brain'.

On my last visit, when she saw the lump and referred me for a scan, she said 'let's hope it comes before the other appointment' meaning the specialist she's referred me to. That appoinment came the next day and although it's at a Neurology and Neurosurgery hospital, I've been referred to the psychiatric department.

Does this sound right?

 

9

I think that this is modern medicine especially from Locums. If they don't know what it is it must be a  psychiatric problem. You've now shown her a lump so she knows that was not conjured up by your mind.

Good luck

10

Thank God for the lump then! Honestly it's been a nightmare because I've been made to feel that I'm not being taken seriously, yet I'm going through extreme pain/discomfort daily. Thanks for your response, appreciated.

11

Back in 1970 I had Flu and never got over it. I felt ill, tired and helpless then I got heat stroke that made me worse. During this time I still forced myself to function and mostly get to work In fact I had two good job interviews and was offered each of them and started one of them although feeling like a Zombie. I kept on saying it all stemmed from the having had the flu and kept and going back to my doctor who kept on giving me meds that made me worse including anphetamines that made me over active and stopped me from sleeping.

Now it would be called chronic  fatigue syndrome.

From an article:

It is a condition that is poorly understood and sufferers have often been treated with scepticism. In the 1980s, ME attracted the flippant label "yuppie flu", and some with the condition were regarded by employers and even my medical professionals as "malingerers". Now a  virus XMRV has been found in ME sufferers but not in those with CF Syndrome.

Will this discovery finally silence the disbelievers? Do you have personal experience with the syndrome? And where does it leave patients with ME symptoms who do not have the virus"

After about 18 months I finally got better. 

12

Thank goodness you've recovered, I know that I've just been going through this for a short time and I've already had enough of it.

Two things I want to mention...first, I've long thought that I have CFS. Back in 2010 I had a chest infection which also caused me to feel lethargic and tired. It cleared with antibiotics but came back about two weeks later, and two weeks after that as well. Since then I experienced random bouts of tiredness, just dropping asleep uncontrollably. It led to me losing my job.

I claimed jobseekers benefit just over a year ago and was immediately pushed around by my adviser. I thought maybe she did that to everyone, and just got on with whatever she threw at me, however one day I went in on a day that was not my signing day. I went in just for some advice and my adviser looked at me sternly, said that she had just been looking at my claim and I was now on code red which meant I had to sign every day. She also forced me to break a commitment I had that day, by threat of stopping my benefits, and made me attend an interview for a course at Seetec. I had to report back to her the next day (friday), then start the course on the monday, for three weeks, which I did.

After the course, I had to again attend on a non signing day to discuss how the course went, then I was put back onto normal signing.

However, on my next signing day, the girl who signs me on (different to my adviser) asked me to sit down and wait, she had to finish something. She then picked up some papers and said to my adviser that they only have one person on code red, then proceeded to read out my name. She pretended to have difficulty pronouncing my name (yet she knows it by heart) then said 'that means he has to sign on every day'. Then added that I also have to bring in my proof of address and passport. Now at this I protested. It was clear to see she was having a game with me and I complained to their manager. However, I didn't give the full details of what had happened. The manager very nervously stated that I wasn't on daily signing, and there was no such thing as 'code red'.

She said that if there was a request to see my passport, I would have to bring it as it would be DWP asking for it. So I brought it and recorded the conversation that followed. My adviser did NOT photocopy the passport or address details, simply looked at them and handed them back, so it's clear there was no official request for these papers.

I need to add here that the job centre have a record of me having IBS and that such unnecessary pressure would trigger it.

After that, my signing days were easier but I felt under undue pressure. I opted to go onto a programme for starting my own business and that all went wrong as well. First my mentor was extremely rude and I had to ask for anohter one, then, after my business plan was accepted, I was rushed off of benefits at a time when I wasn't ready and against the advice of my mentor, who had suggested I wait another month.

The programme provided a start up loan and a weekly income to help get things going, and after signing off I was told I would have the start up capital in a few days. I then used my benefit money to start the business believing the money would be back in a few days time, but it wasn't, and my mentor was not available by phone, and no one had answers for me. So I was left high and dry, and without food. Then the money came through, but after 6 weeks and without warning, they cancelled the programme, leaving me with no money and a thousand pound loan to pay back.

I was completely devastated and had to sign on again, which was rather embarrassing, and now I'm terribly ill. It's obvious that stress triggered this.

It was interesting to read your expereince though because it seems to ring true to me. I had the impression from the moment I first met my doctor that she was appointed by the benefits agency, and that they simply don't believe their is anything wrong with me. But I'm currently going through hell. I think I'm going to get legal advice on this. Thanks again for your response.

13

Eslewhere on this site:

https://patient.info/health/chronic-fatigue-syndromeme

 

14

Thanks for that link Derek, I think everythings falling into perspective now. Where I feel that my doctor is dubious about my condition, it's actually because she IS.

I related to everything in that article but have also had reason to suspect MS or Fybromalgia. Blurred vision when the pain is extreme, stabbing pains, numbness etc. Also, I never thought about this as a possible symptom until last night, I've found that I tend to dribble from the mouth every night, something I've never done before.

I'm actually having a good day today, just a hint of a headache, more alert than usual but still a little achy all over. But this is good for me. Yesterday I spent most of the day sleeping, every time I tried to exert myself, either by cleaning the house or by writing on here, I had to fall back to sleep after 20 minutes or so.

The exhaustion is incredible.

I'm wondering how you recovered from it?

15

When mine was at its worst I felt so bad that I was off work sick for six weeks. I went to a consultant who was not much help and said that I needed MORE Amphetamines even at bedtime.

The next one prescribed a sedative. That's how it was then, uppers and downers.

A Guy I met at the hosital was in pretty much the same boat. We both stopped the 'Uppers' and started walking together in Richmond Park on a daily basis and giving each other encouragement and confidence. We each understood what the other was going through better than our wifes and families did.

Gradually I improved but no thanks to doctors. I guess to great degree it worked its way out of my system after about two years.

I'm very glad to say that I have not had flu since!

 

16

Good on you Dave. This is one of the most frustrating things I've found, that nobody at all understands what I'm going through. Well meaning people are giving all sorts of advice, such as change my bed, change my pillow.  Even my old doctor asked me how many pillows I use. They don't understand the type of headaches, neckaches I'm getting, nor the absolute exhaustion, it's overwhelming. Half the time they make me feel like a fraud.

I always used to walk a lot, and would always get around an hours walking before going to sleep at nights, but now I sometimes force myself to go, and get 5 minutes down the road and have to come back.

I'm a person who always has some kind of poject going, if working or not, but these days I can hardly do anything, it does often bring me down, especially when it goes on for days on end.

Thanks for your advice Dave, i'm going to force myself a bit, see if I can beat this.

Even my old doctor asked me how many pillows I use.