Feeling Lost…

I’m 33 Female from Gloucestershire. I have joined today to get some advice, I’m feeling completely lost right now. The last 3 years have been a struggle, with what started as bad back and a numb leg. I thought possible done some damage to my back lifting etc… this went into tingling and spasms in my leg muscle and back muscles. Went to the doctors prescribed Zappain. Helped but didn’t fix the problem. Visited an osteopath in October 2022 as it would come and go and days I couldn’t walk. They did a thorough check and could feel my right side was very stiff I guess and overused? Can’t remember the exact terms they used now. Massage and off I went, to then return again in a month’s time in spasm in back and legs. But also with daily painful headaches. Osteopath decided there was more to it and referred me to the doctors and asked for a brain scan. Doctor wanted to see me first, went to an appointment and said Dr said don’t need a brain scan. Sounds like anxiety/stress tension headaches etc etc possible trapped nerve causing numbness. So carried on with life as you do, try to remove stress from my life being a mum of 2 working full time, you just have to pick your battles.

Few months down March 2023; tingling started in legs and face. I feel like I have something crawling in left ear and around the inside of my head? Shaking hands but there not physically shaking? I have numb/goosebump feeling in patches not all over, then Face twitching. Headaches are 10 times worse more of a migraine not shifted and have to send myself to bed or a dark room. Go back to the doctors to then be prescribed amitriptyline - absolutely lethal knocked me out within a hour of taken them. Which was great to get a solid sleep but then to wake up feeling fatigued and a feeling of I’ve not slept and walk around like a zombie every morning. Had blood test, no deficiency but my inflammation makers are high? This meant nothing to me?
Plod on taking these then June 2023 I can feel water going down my legs, but there is no water? Frequently feel like I have stinging nettle stings all up and down my legs? My hands felt like they were burning and tight? My legs became restless at night. I felt like I had cobwebs on my skin, but nothing there? I’m going mad surly? This was also accompanied with just pure pain, muscles and bones? Am I getting older is this what getting old feels like? Will I permanently feel like this? Then the zaps happen! Electric lighting bolts down my spine and in lower back, my legs are now permanently walking through mud? Affecting my mood, I’m feeling low it’s summer I should be enjoying the sun with my kids but I’m not, I’m fighting everyday to be happy when I’m in pain and dealing with such strange feelings which make me feel like I’m going insane! Waking up to headaches and just feeling like I don’t want to wake up anymore I can’t cope with it, I’m a mum I have to keep going?! Final straw I then start getting like a needle is being stabbed into my face then randomly over my body? Intense stabbing then it’s gone? My scalp is sore, the burning on my skin is more persistent, my hands are numb and my eye is twitching like mad. Then it goes after a few days? It comes back with something else the latest being “muscle parties” I could watch my muscle twitching for hours couldn’t relieve them, in my neck and my legs, feel them in my back. Oh by this point I’m on 50g amitriptyline. Think it’s time to head to the doctors again,
As I’m a point of going insane. Spoke to the doctor of all the ongoing and she refers me to Neurology as there is something underlying which she can’t find in blood work apart from this high inflation markers and folic acid being slightly low? So July 2023 I was referred to neurology, got an appointment for April 2024. Great I’ll get answers, fast forward to April 2024 I have had the appointment rescheduled 7 times. Up until July 2024. Then 3 weeks ago I received a letter stating my appointment has been completely cancelled and they will be intouch! Radio silence. I’ve explained to dr who apologised as it’s the issues with the NHS currently, which I’m absolutely gutted our amazing health services are being ruined my our government!
I’m now on Nortiptyline which is so much better then the amitriptyline, I don’t wake up like a zombie. That feelings gone but I’m still dealing with such bizarre issues and feelings. The past 7 days have been a struggle hence why I have ended up here, the constant googling has landed up on the ms forum loads of times. I’m not sure if it is ms, my doctor mentioned it on one occasion being a possibility. But that was down to neurology to find out.
The past week I’ve dealt with the intense headaches, the brain fog; I could be at work and totally forget how to do my job? What am I meant to be doing and how do I do it? My words are all over the place, I could sound drunk sometimes yet I don’t even drink? That’s another way of describing how I feel; I am able wake up with a hangover sometimes without even drinking? I just want to feel normal again but these last 3 years have been far from that. I’m still no where with how I feel? I’m sure my family think I’m loosing the plot, they have to tread carefully around me as they don’t know what version there getting of me but it all depends how much pain I am in etc

I have had to deal with severe constipation, I could wait up to 10 days to have a pooh and when I did it was huge! Sorry to much info but it was worse then child birth. I had to dig. I’ll leave that at that. Doctor advised to take senna and laxido which i now take daily which has helped. I can’t blame my diet I eat a lot of fresh produce and we cook from scratch majority of the week. I eat fruit, high fibre foods etc but I’m sure my body doesn’t tell me when I need to go as it’s the urgency that creeps up on me. Same for No 1, I don’t need a wee then all of sudden I really need a wee and need to get there asap expecting the biggest wee ever but majority of the time it’s not.
Other issues I experience is that I have suffered with extreme travel sickness the last few years, flights can wipe me out completely for 24 hours. I can’t be a passenger, I have to drive everywhere! Within 5 minutes of being a passenger I’m throwing my guts up and severe headache. Unsure if it’s linked?
My hips always seem tight like somebody has tied a belt around my hips far too tight? I’m forever dropping stuff, just like I pick something up and my hand decides no not today were drop that. My son has had his breakfast dropped on him due to this which I found traumatic.
I trip and stumble over thin air, I walk in to doorways often. I misjudge a lot?

I write as much down so I don’t forget and hopefully this is a short story covering the last few years, I’ve probably forgotten a lot but it’s a skim over my notes.

As it’s been a bad week this week I think it’s time to look a private healthcare. Does anyone have recommendations in Gloucestershire or Worcestershire area for private neurology assessment? How much am I roughly looking for an appointment or scans etc
Any guidance? Because I know this post has rambled on but I just don’t know what to do anymore?

1 Like

Hi Unicorn. Sorry but I don’t know enough about how the NHS works ( or is supposed to work!) but are you able to get your GP to refer you for an MRI in another health district?

I live hundreds of miles from Gloucestershire so sorry but I can’t offer any information or advice on private healthcare in the area.

1 Like

Hi, I have no specific info and the moderators may remove any links I posted so try a Google search for private neurologist UK , I just did this and a few sites listed . Good luck PS I have had mixed results with private neurologist consultations. One was just as dismissive as he was at my NHS consultation (but I did get a coffee) the next one I saw was brilliant and was able to refer me to his NHS clinic.
I hope you find a good one.

1 Like

Thank you, I’m really not sure. I’ll ask the question. The way my Doctor explained it would be neurology that would organise that.

Thank you, I will make some enquiries with the Winfield. :smiley:

1 Like

I think I get the waiting now, especially when my doctor said there will be wait of up to 18 weeks I never expected that to turn into 40+ weeks still not getting any further.
Unfortunately I’ve not been referred for a brain scan, the osteopath wanted me to have one but my doctor said there was no need. I’m u sure if I could just book a private mri without having a background with neurology. I’m certainly dreading having to go the private route and funding it but I’ve certainly got to a point of needing answers and help. Thank you, fingers crossed I find some answers privately.