Hoping for advice & help

Hey so I’m in very beginning stages back in October 2017 I started to have unexplained seizures quite frequently at least 2 - 3 times a week sometimes several times a day in mid 2018 I was sent to hospital for psychological evaluation for 4 days on a self admission. I was also diagnosed with MDD also known as clinical depression,

The seizures and depression didn’t fit into what is classed as the “normal standards” and couldn’t be fully explained, medications for both only made these things worse.

By 2019 the seizures started to become more spaced out but as this happened I started to get an unexplainable shooting feeling down my spine literally felt like electricity was running down the middle of my back from the top of my neck to the bottom of my back.
I’d also have this feeling in my left leg like it suddenly weighed 150 kg. I began to stutter and find it hard to forum words properly.

No professional would listen properly telling me it was a side effect of the epilepsy and depression. I had a gut instinct it would only progress. I’ve only spoken to one epilepsy specialist nurse at Sunderland royal hospital a handful of times because I only get dismissed being told my symptoms being described don’t add up to being epilepsy and dismissed, same with mental health teams my symptoms don’t add up to being depression. However no referrals or any further investigation was ever even considered and I was laughed off at every turn being called paranoid.

I should explain to a couple of things :

  1. I’m no longer on any medication for epilepsy or clinical depression I function much better off of them as they only slow me down and make symptoms worse for myself. It’s found to be more effective on my own at home taking multi vitamins, CBD oils at a higher strength and neurotrophic supplement (a grouping of vitamins from a variety of natural supplements which help cognitive function without them I would have constant twitches in my face and wouldn’t be able to forum words properly at all.)

  2. I regularly exercise going down to cardio only very lightly such as jogging, yoga and skipping 2 times a week. It’s gone down from running 3 times a week as I’ve had to slow down significantly in the past year.

  3. I rarely eat takeaway or consume alcohol and instead eat turkey, chicken, mostly fish. With plenty of dark green vegetables and variety’s of beans and good carbs such as rice and potatoes. Occasionally I’ll have red meat.

  4. Neurological illness runs in my family on my mother’s side my mum had progressive MS and passed away in 2016, my gran has had problems with epilepsy and is now suffering from Parkinson’s disease and my great gran mother had Parkinson’s.

  5. At the age of 12 - 14 I was constantly going to the GP every few months for bloods being told I could have anemia it came down to being undecided and inconclusive they decided to say it was low white blood cells at the time.

Bringing it to present day my symptoms have worsened over the past year
My seizures are few and far between, I’m rarely depressed although I do have altering moods, I love to paint, draw with biro pen and write I also play keyboard and try to learn bass guitar.
The issues with all these things I love to do is that arms randomly fluctuate feeling weaker, heavier or numb with tingling sensations throughout my day everyday. If I’ve been holding my phone for too long mg right hand will shake, if I hold a pen for too long my wrist and fingers will cramp, lock up and tingle like crazy with a violent sensation.

When trying to cook food my right leg will buckle from underneath me. To the point where I have to switch off the cooker, take a break and sit in a chair when I feel ready to start again.

My eyesight is very hard to focus on and when trying to write or read words the letters will go double and vibrate making me dizzy.

If I walk my dog for too long I will come over tired and flushed feel shaky and need to rest for long periods outside then lie down when I get home.
I have to take it slow getting up stairs
I struggle to sit up in the bath without my chest feeling like it will collapse and shaking.

My back hurts down my spine like there’s no tomorrow with a feeling right in the centre like it’s being churned and twisted.

I struggle to maintain friendships and relationships because of people just not understand and myself not knowing what could be wrong I’m writing on here because I need to know what to do for help as I fear I can’t receive it very easily.

As far as things as speech and memory are concerned they are worsening almost rapidly, my downstairs department also will not function and I just don’t think of anything sexual or feel any need for activity such as that anymore, also find it difficult to have an erection and achieve orgasm (sorry to mention that it’s just what’s occurring)

If I were to hold my hands out straight my right would shake quite badly
My right leg will also randomly spasm and I’ll find myself changing position quite a lot to feel comfortable on the couch watching tv or sitting for long periods, if in the car I have to stretch same as each time getting back up, it’s also a struggle standing up quickly and getting out of a car.

I have to attract my back each time I stand up and can’t bend over to do anything for too long or the twisting pain with a feeling as though my entire upper torso is on fire will occur
I live with my dad and he’s been supportive as possible but has became increasingly concerned and worried about these issues that he’s aware of.

My problem is a couple days ago I spoke with a specialist from Sunderland royal on the ward I’m assigned too which is the epilepsy unit. I tried my best to explain what’s going on but was told it was “anxiety” over the phone within 5 minuets of talking not able to get many words out and being called silly and Ludicrous for “trying to self diagnose” from saying my mother had MS and neurological problems run in my family generation to generation.
How could I be self diagnosing when I haven’t googled any of my issues due to how scary it is to be going through all of this daily, all I did was try to inform this lady of my issues and tried to ask for help. My hope was I’d be taken seriously only to be called, silly, ludicrous and shouted over to be rushed off of the phone. I was told I might get one single MRI of the Brain to prove my idiocy’s and put this ludicrousy behind to go on medication for epilepsy, depression and Anexiety (even though I’ve never been diagnosed with anxiety and told I don’t have any signs of anxiousness by a mental health specialst) all these do is make my symptoms worse and make me brain dead.
My shock to all this is that after this upsetting phone call I spent a day digging around on Google to see what the process should be like
Supposedly I need scans of my brain and spine, probably a couple of each.

So I’ve been in touch with PALS and launched a complaint however the stress of this has caused me to have more issues with back pain headaches and more issues in general with everything. Wishing they’ll help properly but can sadly never trust the systems.

I’m hopefully going to get a GP on the phone soon, fingers crossed they’ll listen and help me be referred elsewhere, while I’m in the process of being in this weird limbo where everyday seems to be a hope that something will be solved.

It’s hard to maintain hope through this and each morning I feel like never facing the day after these instances because even if I manage to be referred to a new team closer to my home in Durham they could just be pure arseholes like I’ve came across in the past 4 years and I’ll be back at square 1 again and again, just don’t know how much more of this I can honestly take. Each day, month, year spite my greatest intentions and hard efforts I seem to be fading away a little more with these symptoms and it’s frightening to me.

I don’t even know what’s going on it could be MS it could be other illness but I’m just not sure, I don’t know what I’d do if it kept being an uphill battle with trying to receive help.
Just hope to get to the root of it within the next couple years, know that it’ll never be cured whatever Is happening but at least with a diagnosis I can start to work with a medication that actually helps and home therapy in forums of right exercise and food so on to treat this and lead life as best as I can.

I can’t live my life properly right now and I just wish I could get on a little better with things.

I know this is a long read and I’m sorry if it’s upsetting, don’t know what to expect putting this up here don’t really have any expectations in general.

Just hoped to be understood and heard it’s kind of like shouting into a void at this point but maybe there’s someone out there coming across this who has been through similar and can advise or sympathise on where to go next.

Just wish I knew what was going on.

If you’ve read all this I salute you, sorry to take up so much time of your day and hope you have a good one also.
Take care :).

Update as of fri 7th may 2021 : blood and physical tests to be ran soon
Hopefully scans and so forth to be done in few months.

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Hi MRanon, welcome to the site. Gosh what a long post but it does show how worried you are and how you have been searching so long for answers. I’ve had lots of unexplained symptoms over the years but they were always put down to MS as I’ve had it since childhood. It’s familial in my family too. Sometimes I think its been other things but its always the same answer from professionals. I’ve had a lot of your symptoms and I hope you get answers and treatment soon as being in Limboland is so very worrying and frustrating. Can you ask your GP for a referral to a neurologist so you can get an MRI and a lumber puncture as that should give you some answers. In the meantime this is a good site to get to know people and to talk. ((((HUGS)))) Maz

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welcome to the forum.I can feel your frustration in your post.I went through similar when i was first ill.No one seemed to believe me either for a few years i was back and forth all the time been made to feel it was somehow my fault.In the end it was one of the GP’s that picked up on something and THEN i was taken seriously.I remember thinking when i got my MS diagnosis that i felt relieved there was something actually wrong as no one would listen.I would demand an MRI of the brain and spine.I hope you get some much needed answers soon as being in limbo is the worst place to be.

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Hi and welcome to the forum. That’s a scary and frustrating few years you’ve been through. It’s awful when so-called professionals don’t listen properly and are dismissive, especially when you haven’t been given the opportunity to fully explain your symptoms.

As the others here have said, definitely push for a referral to a Neurologist and for an MRI. It may still be a long way off receiving a diagnosis, but it’s a good place to start. Unfortunately getting an MS dx isn’t always straightforward and sometimes it’s a case of ruling other things out first and seeing what’s left.

As annoying and exhausting as it is, we have to be our own advocate. Sometimes that means switching GP’s if the current one won’t fight your corner. It’s good that you’ve been in touch with PALS, hopefully they will be able to offer some support.

Do keep posting here if it helps and let us know how you get on.

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Hey I’ll definitely make sure to give an updated response, speaking to a GP today so hopefully it goes smoothly with trying to get it kick started again.
Will make sure to insist on those things and see where to go know getting diagnosed won’t be a fast thing but at least when Its eventually found out what’s going on There’ll be some peace of mind in knowing the cause.

Appreciate your advice and support
Keep safe and take care thank you.

Sorry that you also had to go through similar the feeling isn’t nice. I’ll make sure to post an update in the future. Best wishes, hope your staying safe and looking after yourself Thank you.

Thank you for the response, I’ll make sure I do ask the GP for those things. Hugs back.

Hi I’ve also been through the same as you. Also at Sunderland Royal and also contacted Pals.
Feel free to message me if you want to go in-depth or ask me anything about where I’m at now
Best wishes