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Any wisdom welcome :)

Hi all,

Just over twelve weeks ago in October I went into urinary retention- happened really suddenly which was scary and very rare for my age (26). Ended up being admitted to hospital, catheterised and had blood and urine tests which were clear. Was kept in for a night and then sent home with a catheter with the idea it would be removed in a fortnight as the thought was I had some kind of urine infection despite the test not picking it up. Catheterising was excrutiating. I was exhausted and fatigued with general body aches and pains.

Two weeks came along and I had a trial without a catheter with the District Nurse which failed. Ended up back in hospital under their care and apparently very constipated (sorry if TMI, since this I have no barriers on bladder and bowel convo lol) so they told me to basically take loads of movicol etc and have another trial without a catheter at the hospital Urology dept. Had loads of UTI’s and Kidney infections when I was catheterised too, so tons of antibiotics one after another. Very miserable times.

Cutting a long story short, loads of failed attempts without catheters over the twelve weeks etc so as of this week I have been self catheterising which the Urology nurse taught me to do. Painful but at least I have no catheter.

Did have a CT scan on my bladder which showed a lot of inflammation and a collection of blood before Xmas but with no apparent ‘cause’. I am having a bladder camera tomorrow.

In addition to the above glorious symptoms I have since developed:

  • A noticeably droopy right eye (Dr referred me to Neurologist last week) which hasnt gone away for about five days now. Eyes bloodshot too.

  • Experienced the most gripping intense spasm, which lasted about five minutes, in my back and then released but hurt for a couple of days after.

  • No urges for urination or bowel movements.

  • Knackered all the time. Did have a period of insomnia a few weeks ago which made it even worse but hopefully that seems to have subsided a bit.

  • Having freezing cold feet and fingers at times. Predominantly left side.

  • Pins and needles generally in my left foot.

  • A weird pulling pain in my left palm which has been intermittent. Pain in tip of third and ring finger.

Previously I have been ‘diagnosed’ with essential tremor which is very noticeable to everyone else seemingly. It is an intention tremor so mainly comes on when I reach for something which I think has worsened recently too. About four years ago I had a bad kidney infection and ended up having a complex partial seizure in the hospital (what the hosp Dr said when I asked what it was) but my own Doctor at the time dismissed it entirely and nothing more got done about it.

Went to the Drs before Xmas who was a locum and terrified him, I think. He told me to ‘keep an eye on it’ and bog off basically lol, so I went back again this week and saw a different Doctor who was great and she has said it is best to refer me to a neurologist. She went to go and speak to a colleague as well, and I have been told if anything changes or gets worse I have to get in touch with them asap. The Doctor who was lovely asked me if I had been on google with my symptoms and I just said ‘well, a bit, but I know it wont help’ and she left it at that but I could feel her concern about my drooping eye. She’s said she was sending the referral off that day.

Have been off work since all this has happened in October. Was very miserable over Christmas but now I just would like to know what it is :confused: and obviously for it to go away but that seems wishful at the moment…

I haven’t self diagnosed myself or anything and I’m keeping an open mind but just wondering if this sounds anything like, well, anything…

How long do Neuro appointments take to come through? Is it going to be ages?

Thanks in advance :slight_smile:

Really sorry to read this bladder problems are the pits. I have had on going bladder problems since i can remember, including not emptying properly, but so far although threatened with self cath i manage to empty enough, and i dont want to go that route anyway as it can cause more problems.

Out of interest are you male or female?

I would wait until you see your neuro, your symptoms could be lots of things. If your female even gynea…male well…

Droopy eye well i have a left droopy eye…had opitcal neuritis at some point but boy did i know it with the pain in my eye.

You need to be assessed by neuro, it usually takes about a month to see one.

Sometimes less.

In the meantime no googling lol…

x

Thanks Goldengirl :slight_smile: Yeah the bladder stuff has been, and continues to be, a bit depressing to say the slightest. One thing about the self cathing is it is much better than an indwelling one— defo do not recommend that! Bladder camera was non-starter today, I have to have it under a general anaesthetic as it was bleeding and way too painful. I wouldn’t worry about the self cathetering if you did need to, it isn’t as horrendous as it first seems, if that puts your mind at ease any. Obviously I totally empathise on it being the last resort as that is how I view it.

I agree on my symptoms being a wide range of possibilities and it will just be a wait and see thing. I guess really everything coming on so suddenly and severely has been the key that has puzzled everyone. These symptoms and the fact nothing seems to have improved in twelve weeks, albeit worsened at times, points to it being something a bit more than meets the eye according to the Doc. I guess I am still getting my head around being so unable to do anything and it literally came on overnight, but looking back I have been quite lethargic.

Hope it does only take 4 weeks for the appt :confused:

Can i just ask i know its a bit vague lol, but have you been away anywhere? Do you walk in forests, or long grass etc…? I know odd thing to ask but its the lethargic thing was interested in. x

Nope, unfortunately not. I usually work 60 hours-ish a week in a city community based job.

Had a bizarre few episodes of my right hand going stone cold (internal feeling and external one) despite the other one being fine and then after about 20-30 minutes a flooding of warmth coming back into it. Kind of like that feeling if you had your arm in cold water then put it in warm. Havent been leaning on my hands or anything when this has been happening either :confused: weird eh! :slight_smile:

Crumbs, what a horrible time you have been having. No wonder you are feeling a bit low - those are really nasty symptoms to deal with, and of course you want to know what is going on. I hope that you get some clarity soon and that things quickly start to improve for you.

Good luck.

Alison

Just wondered as one of my buddies on another forum had similar retention problems and had Lymes…didnt even remember being bitten by a tick but had a dog. They would go for walks in the park and fields etc, so some how he had been bitten but never knew it. It took several years to get diagnosed…x

Agree with Alison’s comments. Horrible for you and so sudden too. Nothing stopping you or your GP contacting the neuro department and pleading your case. They may be able to put you on standby if they get a cancellation. May be worth you telling them you can attend at short notice.

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Thanks everyone for the support :slight_smile:

Humbug that is a good idea. I may have to go back about my eye because it is feeling very sore, although not sure whether to just book up and go and see an optician instead.

I only went back to the Doctors last week because it just isn’t going away. When the first locum guy sent me away and said the bladder issues are nothing to do with the other stuff I am experiencing and then just basically shrugged his shoulders, I felt like I was making it up :confused:

It’s a very good idea- thank you for caring. I guess it is just limbo for the moment till I find out what is wrong.

Retention is rubbish but I am at least getting my head round the self-cathing now. Just a bit depressing to think it’s potentially forever, but I’m sure everyone has gone through something like that if it happens to them.

Thank you very much for your support Alison :slight_smile:

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Neuro appointment is through for… drumroll… 20th of April. Does anyone have experience with paying for private MRI’s? I can ill afford it but it is getting silly now; I am still experiencing all of the above and everyone keeps shrugging their shoulders (or sympathetic head tilt). Bladder issues are doing my head in.

Is with contrast better than without for a potential MS dx? Any help much appreciated.

What a lot of people do (me included) is to get the GP to do a referral to see privately a consultant neurologist who also does NHS work. I had private health cover with work at the time, and so they paid for the consultations (several of them) and an MRI and lumbar puncture before I was then transferred to his NHS list after dx (MS, in my case). Other people pay for the initial consultation and then get transferred to NHS at that point before any other tests, if paying for an MRI would not be feasible. Either way, it saves a certain amount of faffing about.

Click on the ‘near me’ tab at the top of this page to find out who does what and where in your area. Your GP is likely to have good local knowledge too.

Good luck.

Alison

Luckily, I never had to pay for my MRIs personally, but I did have them privately, and was invoiced - which the insurer then settled.

I can promise you it’s £100s. If you wanted the most expensive/comprehensive, which is complete brain and spine, with contrast, and a consultation to discuss the findings, you’re looking at not much change from £1000.

I’m not sure I ever kept the records, but I think I worked out one time it cost “me” (i.e. the insurers) £10-£15K to get diagnosed privately. Of course, that was for every blood test (100s of lab tests including a couple of non-standard ones not normally ordered), every MRI, every consultation, a couple of X-rays, and so on.

But even MRI and nothing else is in the £100s.

I certainly wouldn’t bother with contrast if you’d be meeting the bill personally. It’s only useful for distinguishing between active and historic lesions, but makes it much more expensive - I believe not least because the law says you have to have a doctor present, so you’ve got to cover the attendance of the more highly qualified person, not just the raw cost of the contrast agent itself. Whilst it’s useful to find out whether lesions are active or historic - and thus how active the disease is at the moment - it’s not really critical from a diagnostic point of view, as the key finding is whether there are lesions at all, of any age. If a scan without contrast can’t see any, adding contrast won’t change things.

Tina

Hi Ludo,

My first neuro appointment should have been the 11th of may, I couldn’t wait for that. I phoned the private hospital that the Neurologist I was referred to on the NHS works for and paid to see him for my first appointment private. It was worth every penny! and they gave me an appointment within a week!

I don’t have private medical insurance so I explained to him that I couldn’t afford to stay private. He was fine with that and said the next thing I needed was an MRI Brain & C-Spine, he said those are very expensive private so he would request when he got back to his NHS base. I got the scan on the Wednesday after seeing him on the Friday, I have my next appointment on Wednesday this week when I am hoping for answers.

Good Luck getting an earlier appointment.

Snowqueen

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Thank you so much Snowqueen your experience has really helped me.

I ended up going to the GP on Monday and she agreed it has been such a long time now and my symptoms are mercilessly worse particularly around sharp head pains and bladder and bowel issues, so I am going to pay private and go and see a consultant. GP said it is a bit pointless to get MRI scans done without having seen a consultant and that seeing a consultant will be cheaper and they may well be able to make better use of my up and coming (hopefully, though still havent recieved a letter about it yet) NHS appt at the end of April.

Nuffield rang me today and I have a 40 min Neuro appt with their consultant on the 24th of March. Glad I have decided to do something more as this morning I woke up with right sided ptosis where my eyelid droops down- something I’m experiencing intermittently. It is like a bag of weird and annoying symptoms although this thread and some pictures i have been taking will be helpful to take along with me to my appts.

How did your appt go today? Hope it went well and was useful to discuss your scans :slight_smile: I have just read your thread with (supportive!) interest. Thank you for your reply.

Hi Ludo, My appointment is tomorrow I’m just hoping desperately they can give me some answers. I am so glad my experience has helped you. I really hope your appointment gives you some answers and gets you in the NHS system quickly like it has me. I will update my thread after my appointment as so many people on here have supported me and helped me not to feel alone through all of this.

Take care and let us know how it goes

Snowqueen

Hi Alison, thank you again for your support and great advice.

I went along to GP yesterday who advised seeing a consultant, not a scan, first. GP re-wrote and has sent my NHS referral to send to Nuffield. Really appreciated how nice GP is- and she (GP) said it has been a long time since my symptoms began in October and even further from her sending my referral in January as ‘urgent’. I have been seeing a Consultant Urologist but they’re a bit at a loss really other than getting me self catheterising.

I don’t mind waiting but it’s just horrible at the moment to not know what is happening to me, so I was really pleased when Nuffield offered me an appointment today for the 24th of March which is great and a month sooner than my NHS appt. GP said seeing someone privately should assist the NHS process along too and make best use of the appt. The ‘Near me’ guide was useful, thank you. The chap I am seeing looks like he does NHS work (as per Nuffield website) but isn’t named on the ‘near me’ guide it so fingers crossed it works out!

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Hi Tina, thank you for your great advice and information about the contrast and MRIs- I did not know any of that.

I found somewhere in Solihull, and another place in Hereford, that do relatively priced MRI scans- around £200 per area (though full spine would mean £££) with a consultant radioneurologist who interprets the scans, however GP has said she would prefer me to see a consultant first if I am paying for anything privately, so I have taken her advice and been referred for that.

It sounds like it was a huge cost for your DX- it really is the time to have medical insurance; I had it in my previous job but then didn’t bother in my current one… regretting that now! Got a private appt booked for 24th of March now so hopefully will assist with my NHS one.

Thanks again for your info and time :slight_smile:

Oh yes! I forgot what day it was :slight_smile: Yes, thank you- I hope so too. Even if it speeds things up a little, or at least provides a track in which we can determine what is going on, then I will be satisfied. Hope all goes well tomorrow and look forward to hearing your news which I hope will be useful and positive for you.

Ludo