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AT MY WITS END WITH PROGRESSIVE NEUROLOGY SYMPTOMS

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vicky89033
vicky89033

Hi I would be gratefull for any advice. my life has been ruined by what seems to be a mistery nuero problem- a mistery as my doctor and 2 neurologist cant find out whats happened to me. my GP has been very good but specialist dont seem to even want to figure out whats going on. I am struggling with symptoms that are becoming more severe and dont know what to do. I started with a weird foot slipping feeling then a sudden shudder feeling (like the feeling you get when falling asleep and having that falling feeling and jolting) im now also getting a feeling of many quick jolts throughout the day. I have a heavy pressure in my head like its swollen. just touching my head hurts. I get very intence tingling feelings under my scalp. I also have numbness in all limbs now,inbalance,vision problems(glazed vision and shadows) i have facial and jaw pain and shooting sharp pains in my head various areas comes and goes.all this has been in flares but nearly every day for 2 years recently unbearable as more intense. I have had a CT scan (2 years ago) and MRI scan 15 mths ago both clear. any advice please

0 likes, 10 replies

10 Replies

  • blessedmum
    blessedmum vicky89033

    Posted

    Hi Vicky,

    I'm so sorry for all that you are going through. Have you been tested for Lyme disease? Just a thought. Feel better soon!

    • vicky89033
      vicky89033 blessedmum

      Posted

      thanks for your reply yes ive been tested for lymes disease and finaly (after 3 basic test and bloods getting lost) i got a possitive co infection result in march this year but my GP has referred me to 2 infectious disease specialist and they have dismissed it as being lymes without even seeing me! i have always susspected lymes and when i got the result thought that was the answer but im no further forward
    • blessedmum
      blessedmum vicky89033

      Posted

      Oh that's awful! Push hard to see one of them. Be insistent! If they suspect Lymes did they give you antibiotics? A three week course of doxycycline or amoxicillin often does the trick!! If it's a co infection, you may need another antibiotic. Go back to your GP if you have to and raise some hell. If that's what it is, it's fixable! Good luck!

    • Luk4lotsmore
      Luk4lotsmore vicky89033

      Posted

      Hi Vicky,

      I'm so sorry for you, I'm also going through. Some similar symptoms, it's also driving me mad as I can't even claim medical retirement from work-just left hanging.

      Just a thought(speak to a dr before taking this but), I had Nadolol 1 & a 1/2 80mg per day along with 3x300 Gabapentin , which does seem to help a little

      Hope you do get some resolve

    • vicky89033
      vicky89033 blessedmum

      Posted

       i was given a 2 week course of doxycycline in march ( just toeep me quiet i think) but had a realy bad time while taking them which is als typica of lymes. as far as i can find out when its gone on for so long it takes longterm antibiotics
  • Heather2612
    Heather2612 vicky89033

    Posted

    Hi Vicky. Your symptoms are identical to mine before receiving correct diagnosis and treatment. Have you had your vitamin b12 tested?
    • vicky89033
      vicky89033 Heather2612

      Posted

      hi thaks for your reply i have had my B12 tested a few times and it seems to be ok
  • kaste919
    kaste919 vicky89033

    Posted

    I have so many symptoms like this it is insane. Mine started in 2003 when I reacted from a flu shot a few weeks after I had received it. Since then, I have been diagnosed with Guilliam barre syndrome which is an autoimmune issue that attacks your nervous system. I have had many other autoimmune issues as well since 2003 because of this. I now after going to many physicians, understand that there are foods that I can eat that create more of these neurological reactions. So, my suggestion would be, that you attempt to find someone that could possibly see how much autoimmune you might have? This is a blood test you have to request. Also, you could look up my diagnosis as well as google nervous system reaction to inflammatory foods, or affected by such things as gluten and corn. I certainly am no doctor and I'm not trying to diagnose, simply suggesting you might want to look this up as I have suffered so much myself from this.

    • vicky89033
      vicky89033 kaste919

      Posted

      thank you for  your reply i will look all this info up and discuss with my GP any suggestions and ideas are welcome
  • vicky89033
    vicky89033

    Posted

    hi thanks for your replies an update i was admitted to hospital after the above symptoms became acute my vision was realy bad ( i could only see what was above me ceiling ,doorframes ect) also intense pain and pressure in my head and jaw,ear and eye pain they did CT and MRI scans and they showed 2 cyst on my brain ( not on MRI 2015) they just sent me home saying i would get an apt with neuro  the letter has arrived ( 7th dec apt!!!) i have no idea what these cyst are if im going to need any treatment and im back home still having the symptoms and feeing so ill -GP doesnt seem concerned ither
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