46 Weeks wait for first app. Do these sound familiar with early MS signs?

New diagnosis and before diagnosis
1

Hi all first time poster here.

A explanation of what I’m experiencing:

Back in June of this year I experienced what I believed to be a seizure and had a witness to it happening. I drunk half a beer and after a big gulp, had extreme chest pain and eventually blacked out. Luckily somewhat sitting down I seized for about 10 seconds and when I came to, was very confused as to who I was with and where I was. I then fell asleep afterwards for quite some time.
The next day I decided to go to the hospital. Over 2 days they ran multiple checks, ecg, blood tests, chest xray and all was clear. I was then dismissed with no further guidance.

It wasn’t until about 2 months ago that I started to experience a cluster of symptoms that have somewhat remained. These include;

  • Lower right side back pain, especially painful when moving or not sitting in a specific way. (Lasted about a month and spread to my right testicle also).
  • Electric shock sensations, almost a quick jolt through mainly my arms but have felt on my face and elsewhere.
  • Dizzy/unsteady especially with eyes closed.
  • Metallic taste in mouth.
  • Hand tremors.
  • Lots of body jerks, even when awake (more than usual as always experienced when falling asleep)
  • Sleeping excessively
  • Sleep paralysis.
  • Intrusive thoughts of accidentally harming myself, i.e cutting a finger whilst chopping vegetables or falling and smashing my face.
  • Twitches in toes, legs, abdomen, eyelids

I have experienced a lot more but I’m quite forgetful lately. All of these symptoms have kindof came and went at different times. The electric zaps I experienced about a year ago for the first time and they seem to happen for a few weeks and then disappear again. At that time I couldn’t figure out what it was and so ignored it.

My gp eventually did further blood examinations and these came back clear. They put me through as an urgent referral to see the Neurologist but I’m still looking at 46 weeks waiting list just for the initial consultation.

I’m a male 25 years old and I suffered some childhood abuse and suppressed feelings for most of my youth. My parents let me drink and somewhat promoted it from the age of 6. This later escalated into some substance misuse. I now live relatively healthily apart from some smoking and the very occasional alcohol consumption. I’m wondering if this is what other people have experienced with MS and what I need to be doing to get onto the right path for preventing episodes?
I already hope to start some things like BJJ in the hope it will help with movement etc. i’m fearful it will limit my ability to play guitar, hike, dance, and just the few things I find enjoyment from in life.

I apologise if this is a lot to read and if ive missed out important information, im dyslexic and find writing quite difficult.

2

When I was worried that I had MS, I took it as an excuse to start smoking again. This was not a smart move. Smoking can make MS worse - the evidence is lamentably clear. Stop if you can, and I do recognise that this is the last thing you want to hear. But it sounds as though you have practice in giving up maladaptive coping mechanisms, so you know it’s tough but you also know from experience that you can do it. If it turns out you don’t have MS ( and I hope you don’t, obviously) then bonus: you don’t have MS AND you’ve already done yourself the huge favour of having given up the fags.

I am so sorry that the wait to see a neurologist is so shockingly long. That is really frustrating for you. All I can suggest is, keep badgering the consultant’s secretary on the phone and make clear that if there’s a cancellation, you’ll drop everything to get there.

I am sorry that you are having such a worrying time.

3

Hi Alison,

Thank you for your response.

I should clarify I’ve been a smoker from an early age, stupidly. I hate the cigarettes, I rarely enjoy them and I feel well equipped to give them up. However, I smoke cannabis and this is something I fear will be a lot harder for me to give up. Cannabis allowed me to step away from other addictions like ketamine and alcohol that I had misused in the past and so it has become quite a “norm” for me. I’m not saying its beneficial whatsoever and I’m trying to work on reducing my usage and eliminating.

The waiting list is very long and I felt dishartened because the lady on the phone said that although I’ve been put through as the most urgent, it’s still 46 weeks waiting list.

I will keep up the pressure on the GP.

1 Like
4

Congratulations on moving away from more troubling habits. You are clearly a person who can deal with difficult situations and make them better. I hope that this fortitude helps you through the long process of finding out what ails.

You asked about things you could do to help yourself. What you eat matters, so here’s my other suggestion on that. Prof Giovannoni is an MS specialist who puts great info out there. Many of us read his stuff. I try to eat this way myself and have done for some years.

5

I’m in the same boat! Been having loads of symptoms. I was Urgently referred to a neurologist in June 2023. I’ve been waiting for 36 weeks now and no sign of an appointment. Currently having a symptom flare up which isn’t helping. Hang in there! I’m hoping to be seen soon and if I’m not I’ll be asking for a transfer of care!

6

That is just terrible. :disappointed:

7

I know, I have today emailed the PALs team to see if they can tell me where I am on the waiting list as I can’t get through to the Neuro department by phone!

8

I am so sorry that it’s such an uphill struggle.