Any neurologists? Desperate mum.

[Finallygotmy3]

I am desperate for urgent help UK.

Backstory:
I had an L5/S1 Microdiscectomy on June 13th. Around 2 weeks after surgery I noticed my bowels were not the same and I struggled baring down, much lessened urge to urinate but I can void if asked. No incontinence, more like retention. After attending A&E multiple times Cauda Equina was ruled out as Lumbar MRI clear and I can feel touch. Thats fine but the issues are still there, i then developed a huge amount of flank pain on my right side, assumed kidney, attended A&E, dr said this was all in my head, after begging for help he relented and gave me an xray, this showed huge fecal loading on the right and under diaphragm (cause of pain). I asked the ED Dr if that should prove what I'm saying like the muscles are switched off and things have stopped in my bowels. He said no, constipation was common (no I'm not on any meds, took 2 codeine the day after surgery) and I've never had this issue in my life. Sent home with impaction regime and with senna and laxido things are moving. I was also Tachycardic on multiple A&E entries so they shoved Propanalol at me and told me I had anxiety.

Since then I have developed jelly feeling in legs but again can feel touch and walk, parathesia across my arms and face. Right of face went numb so called 111, obs done again and all fine so sent home. I have chest tightness, breathing at times can be laboured but my oxygen is always fine.

Since then I've developed insomnia (1 hour a night if that of sleep). Never had this issue in my life, all put down as anxiety. Hubby and I had sex for the first time yesterday and I couldn't feel almost anything internally. I stopped pregablin that I was taking for sciatica a few weeks back so thought maybe I was in withdrawal, so I took some 2 days ago and slept a few hours, but last night I haven't slept a wink.

How I feel right now is like I'm losing primitive reflexes/sense. Sex, bowel, bladder, emotions, sleep. This is not in my head, this has all developed slowly, A&E dr refused to refer to Neurology, as has my GP but they seem happy to prescribe a very strong sleep med which I don't really want to take. If it works they won't prescribe anymore and then I'm back to square one.

I don't think this is disc related, but maybe brain and misfiring signals/hormones. I'm concerned there could be inflammation or an underlying infection (bloods normal). I'm in desperate need of help and someone to take me seriously, I'm not mentally unwell, I have physical symptoms the medical community are ignoring and that ofcourse is distressing. Any opinions welcome/help. I can't afford private, I'm sure there are a huge amount of people on here intelligent enough to figure this out. Family are supportive but also kind of stuck on how to help, I'm scared this will escalate as no sleep is obviously not good for the brain or functioning. I'm an intelligent woman, I work 2 jobs and I've had this body almost 37 years, I know it isn't working well.

I've taken all the drugs mentioned.

I would say the priority is to get the Pregablin and taper that down over a few weeks, month even. Stopping that cold turkey is not recommended.

Zopiclone is horrible. It is very horrible and the insistence that she just push on from some posters is very irritating. Gabapentin does help sleep and calms the nerves literally in my case. ( I have gabapebtin instead of pregab)

More people need to not be mindless zombies who just do what doctor says.

Most doctors are absolutely useless about meds. I tell them about side effects and they never bring it up to you themselves in all my experience.

Senna is bloody horrible.

Asking for Movicol and sticking with the Laxido for now is a better idea unless the constipation worsens.

Amitriptyline can be very good ( as recommended by the previous poster), but it knocked me almost unconscious until the next afternoon when I tried it. I gave up because drowsiness was too much.

Half a tablet could really help everything though including the insomnia.

I usually cut my new meds in half with a pill cutter to see myself what side effects will do ( because the GP will not tell you or even understand half the time).

I'd rather not see posts pushing OP into taking horrible meds and treating her like a naughty non compliant 5 year old.

Independent thinking is vital now in the face of over worked, under resourced medical professionals who will fob you off, do the absolute minimum, gaslight you into bloody anxiety before you even had anxiety.

OP, I hope today has been more fruitful! 🙏

Codeine causes constipation as do many other drugs. Please check the side effects before taking any medication.

Some very interesting food for thought, the dysautomnia struck me massively. I've noticed my eyes and mouth are very dry despite hydrating a stupid amount.

Have the g.p at 17.20, no sleep last night and I'm honestly terrified to go. Whilst I definitely do need sleep, there is definitely an underlying reason. I was not anxious last night, had a blast with mum and family and still did not sleep with my own mum next to me in bed. My neck is also very stiff from all the tossing and turning in bed, shoulders hurt and aching too. I'm so done! I feel like the surgery has completely funked me up.

The appointment is in 20 mins, I shall update.

Would like the opportunity to discuss a drug of lesser aggression first regarding sleep so hoping they can help.

Hopefully you took the meds and now asleep @Finallygotmy3 ?

Hi all, I'm got some medication (not zopiclone) and am managing some sleep. Dr was happy I was ok but will gladly help figure it all out.

My friend said she went through a period of insomnia and had to up her antidepressants so I'm also thinking of asking for some of them to see if it helps. I'll do anything to try help it all x

What meds prescribed?

What is the doc suggesting next step is? Any tests @Finallygotmy3

Are you depressed?

I don't feel depressed, I don't feel low as such just frustrated. Last night I spoke with my physio who suggested lots of deep breathing to try regulate myself. I did this while snuggled in bed with my son and slept the full night without medication.

I woke up incredibly anxious again so I know anxiety is playing a part. Having said that, leg weakness hasn't been much of an issue the last few days, I've managed bowel movements without senna for 3 days but I feel like I'm getting backed up again today as my side is hurting.
I've spent a lot of my time focusing on my children and trying to pull my head out of all this crap. I have a follow up with the Dr on Monday so I'm hoping I sleep some more x

Get some Laxido from the pharmacy - it works totally differently from senna, and cns be taken for longer term to support your guts working properly rather than forcing them to act.

I was using both laxido and lactulose for 3 weeks prior to the senna with no results other than overflow. Dr tried to tell me to take more satchets and I was like are you for real? I was leaking on the carpet, so I introduced senna to get the muscles moving which seems to have helped.

I just feel like my nervous system is off, I have had another night of sleep on my own (only pregablin I reintroduced) - it was broken but sleep nonetheless. 2 weeks after surgery I had lumps in my armpits that I put down to the quick flannel downs I was having but now I'm considering whether I had MRSA or another infection. My chest/neck/face have had a staph infection since surgery too but at the time i put it down to sweating in bed. I know my own body, my sex drive has gone alongside most clitoral feeling. I've drunk loads throughout the day and the need to pee is just nowhere near what it was before.

The way I'm looking at things right now is that I find it odd people are just telling me to accept this weird new body and completely disregard the way it has worked for 37 years. I understand anxiety and how stress hormones can affect the way the body works so I guess all there is is time to see if things resolve.

Another weird symptom I have is my period, huge amount in the toilet but pad is next to empty. I have PCOS and frequently soak a tampon and pad, i can't feel these clots coming away like I could before, we all know that "oh shit I've come on" moment down below and now nothing.

I also understand that this all sounds a bit bonkers and I completely get that. All I can do is wait to speak to the neurologist at the end of the month.
The biggest issue I think I have is that in the absence of typical neuro issues such as slurred speech, communication/memory issues that people can hear/see you are made out to be lying. Sensory issues pose a problem for accurate measuring I think - all i can do is explain but I don't even want to do that anymore because what is the point?

I know it’s not the route you’re but request a referral to a pelvic physiotherapist or just a general physiotherapy referral would get you on the right track. Where I am, you can now do a self referral to msk services via your GP clinic website.
physio will triage your referral and allocate to their appropriate service, and will liase/refer to neuro if required.

How are you doing now @Finallygotmy3 ?

How are you doing now @Finallygotmy3 ?

How are you doing now @Finallygotmy3 ?

How are you doing now @Finallygotmy3 ?

How are you doing now @Finallygotmy3 ?

How are you doing now @Finallygotmy3 ?

Sorry! No idea why that posted multiple times!