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I'm still in limbo

Posted , 4 users are following.

Lulu71
Lulu71

Well I had my lumber puncture in January and was told it would take about 3 weeks for the results, 7 weeks have passed and still no appointment to see the neurologist, I phoned and they say they will send an appointment out as all the results are back. I waited a week but still no letter so I phoned again today only to be told the neurologist is on annual leave for 3 weeks. The results are there but now I have to wait! Surely if they have my results they could pass them on to another neurologist. And I'm guessing when I eventually get an appointment I'll have to wait a few weeks. This has been going on since my mri scan last September which showed lesions and demylation. I'm just angry that I have to wait when all the test have been done and results are back. 😡😡😡

0 likes, 13 replies

13 Replies

  • marilee43089
    marilee43089 Lulu71

    Posted

    This is ludicrous.  Are you in UK?  I see no reason why the results cannot be received in one or two days.   Did they think MS after looking at your MRI?   Boy, I would need to be sedated over this.
    • Lulu71
      Lulu71 marilee43089

      Posted

      Hi Marilee, yes they think it's MS with my symptoms as well as my mri scan findings. The lumber puncture was to find out which type. My gp can't give me anything as they wait for the neurologist, my worse symptoms are fatigue, heavy legged and tingling all on my right side. It's so frustrating! 🙅🙅🙅

  • wendy80842
    wendy80842 Lulu71

    Posted

    I'm sorry that you're dealing with what is a very common issue. If you're in the UK, like me, diagnosis can be a very long, drawn out process. Sadly, it's just a matter of waiting. If I were you, I'd stick with whoever you were originally meant to be seen by. Changing drs could push diagnosis back even further. Btw, I was diagnosed with ms in 2004.

    • Lulu71
      Lulu71 wendy80842

      Posted

      Hi Wendy, yes I'm I n the UK. I know I have to be patient but I'm really struggling with my symptoms right now.

    • wendy80842
      wendy80842 Lulu71

      Posted

      Hi again Lulu, in the early days, I found it a major struggle, dealing with the range of symptoms. God knows I have bad runs, too. You mentioned electric shocks that you get, try reading a little about restless leg syndrome, it's the symptom that I dread most, more than neuro pain, which only 10% deal with on a regular basis. I really recommend looking for simple relaxation techniques, breathing exercises kept/keeps me sane, through the worst days. Long term health problems really are all about adjustment. Hopefully there'll be a better diagnosis for you.

    • marilee43089
      marilee43089 wendy80842

      Posted

      I have RLS.  It's uncomfortable, but I don't find it that intolable.  Lots of people have RLS that don't have MS.  My doctor gave me some Neurotin to try for the RLS.  Didn't help, so i stopped taking it.   

    • wendy80842
      wendy80842 marilee43089

      Posted

      Yeahi, I have both, the only way that I can reduce the effect of the RLS, is to move around, trying to move in different ways, so my legs aren't walking repetitively. This eventually seems to almost trick my body into not causing RLS symptoms. Unfortunately, my MS makes control of my legs difficult, to say the least, my balance isn't good either, anyway, the 2 conditions don't work at all well together. When they're both very active, it feels like a 'perfect storm' of neuro awfulness.

    • Lulu71
      Lulu71 marilee43089

      Posted

      I do have good days which I love, I feel a different person. I have had really bad days when I'm in pain, I can only describe the pain as really bad toothache going down from my buttock to my toes, I'm on a lot of medication for my back as I've had back surgery, they say it's not connected but I'm not so sure . I'm waiting for the post everyday but I also wait in anticipation as to the date of the appointment! If it's weeks away I think my fuse may blow 😞😞

    • Lulu71
      Lulu71 wendy80842

      Posted

      Hi Wendy, Yes I will, actually I do have bad nights were I feel I just want to take my legs off lol. I had a very bad night not long ago when I nearly took myself to hospital. As I said it's my legs and the fatigue that are the worse, some days I just sleep all day. My brain wants to do things but my body says no! My other symptoms I can cope with more, not that I'm happy about them, it's all right sided including my hand which is weak and I do have dropsy days. I'm due to go back to work in April but their not happy with my symptoms as they will affect my job, I work for the nhs in podiatry so my hands do a lot of work. Until I get to see the neurologist and get treatment I'm in limbo and have not control over when and how bad my days are going to be.

  • marilee43089
    marilee43089 Lulu71

    Posted

    Try to describe symtoms is so difficult.  Lulu, can you describe to the best of your ability 'heavy legs' and 'tingling'.   With heavy legs, can you walk briskly and straight? Does tingling hurt?  Is tingling constant?

    I'm at the beginning of this journey have not had the MRI yet.

    • Lulu71
      Lulu71 marilee43089

      Posted

      When I have a heavy leg day (it's what I call it) I feel like I'm dragging weights round with me and sometimes they just won't go, I've stumbled a few times. It's my right side that is affected. I get electric shock like feelings and a tight band around my thigh. I get feeling like there are spiders crawling up and down my leg. Yes it can hurts some days. I also get facial and neck numbness and my right hand is weak, I don't have much grip. I've had a few vision problems too but the heavy legs and the fatigue really gets to me. I find myself sleeping all day on my bad days.

    • marilee43089
      marilee43089 Lulu71

      Posted

      Thank you Lulu.  Do these symptoms wax and wane by the hour, the day, the week?  For example, with the numbness, does it happen at any special time of day?  How long does it last?
    • Lulu71
      Lulu71 marilee43089

      Posted

      They can last from 24 hours to a couple or more weeks, I'm hoping once I can start on treatment I'll get better at managing my symptoms, good luck to you Marilee

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