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CAN ANYONE ADVISE ME IF THIS SOUNDS LIKE AUTONOMIC NEUROPATHY

Posted , 5 users are following.

vicky89033
vicky89033

Hi i realy need help and advice as to what is happening to my body and causing 24 hr pain and numerous symptoms. until 2012 i was fit and very active then started to have balance,vision and numb,tingling,stinging pains (at that time left sided arm,hand,face and leg) then gastric problems started followed by what seemed to be cardiac this has been progresive and now affects my whole body. ive seen neurology,cardiology,gastro,endocrine,rheumatology,eye specialist this yesr alone ive had ive had 39 hospital apts with various specialist and had every test possible. autonomic neuropathy keeps coming up and ive just had test at queen square london but no one has been able to tell me whats wrong or whats causing it. any ideas advice would be of great help my symptoms are extensive and seem to come in flares but every single day im in pain generaly unwell and it has ruined my quality of life

1 like, 12 replies

12 Replies

  • tony06571
    tony06571 vicky89033

    Posted

    Wow, You described me exactly. I have always been very active and healthy as well. The pain and the gastro problems do seem to be like flare ups. I have tried lyrica as the Dr thought it might be fibromyalgia,however absolutely no relief and the side effects of lyrica are horrible.I too have had many test and still no diagnosis. I have read other peoples stories online lately and many people are saying Cymbalta helps. I believe from what i have read it is a anti depressant, and also used for pain associated with nerve damage.I have a appointment this week with my Dr, i am certainly going to suggest it.

    The only other relief i have read about is some form of morphine and another poweful pain med i can not recall.I dont see my Dr writing me such a prescription. Nor do i think i want to go down that road at this point.It is very puzzling to me that so many people are dealing with this and no diagnosis. I understand your pain and frustration. Hopefully somebody will have a solution soon. One thing i am using is a back massager under my legs . I stumbled across this idea by accident however since the pain is more intense while i am lying down especially feet calves and back of my legs. It does bring a little relief. As for the stomach pain , thank you for sharing . I hate that you are feeling it as well , but i thought i was dealing with separate issues. But it all seems to be related.Goodluck and if i find any diagnosis or relief. I will certainly let you know.

    • vicky89033
      vicky89033 tony06571

      Posted

      Thanks for your reply, i was told in 2014 it was fibromyalgia but im not having it as no one at the fibro support group has all these symptoms and its not progressive. i find it puzzling that so many people have very similar symptoms and no diagnosis. i thought i had the answer this year when i tested possitive for lymes disease but my GP wont persue this (it was a NHS test not something done abroad or privatly)
  • derek76
    derek76 vicky89033

    Posted

    AUTONOMIC NEUROPATHY and idiopathic neuropathy seem to be phrases used when they do not have a definite diagnosis.

    There are many neurologists but very few are specialists in neuropathy. My GP found that the main centre is in Bristol. I have been told of one at Kings College in London who does a morning at an NHS hospital in Maidstone Kent and an afternoon at a private clinic in Sevenoaks.

    I've chosen the Sevenoaks one as it is easier to get to from where I live in Sussex and it does not have the long waiting time. I will be seeing him on Wednesday.

    • vicky89033
      vicky89033 derek76

      Posted

      thanks for your reply, ive just been to the autonomic unit at queen square london- i was told this was the only one in UK i live in north west so it was a 6hr journey but i did have extensive test i have to go back in nov though as they forgot to book my small fibre nerve conduction test (proberbly most important!)
    • derek76
      derek76 vicky89033

      Posted

      Were you the lady who posted about being worried about having to travel there on your own? If so glad that it all went well.
    • vicky89033
      vicky89033 derek76

      Posted

      hi derek, yes the things i was worried about were a problem- the hotel i was left at was away from the hospital and although they arranged transport to the unit after 1st days test i was just given a map and told to walk back! i was so glad to get home. the unit was very good while i was there but being left in a travel lodge with the only backup being ring 111 or 999 if you are unwell is scarey
  • derek76
    derek76 vicky89033

    Posted

    If you Google 'Autonomic Neuropathy Is Treatable' it takes you to the site of Touch Endoctinology with a lot of (possibly frightening ) facts and information.

  • mandy77480
    mandy77480 vicky89033

    Posted

    Hi Vicky

    I've had all your symptoms and many more.

    After 3 years 2 Neuro consultants an enormous amount of tests

    2 movement specialist the 2nd asked for a nerve conduction test

    to be done. The first by a technician the second by the

    consultant. He diagnosed me in less than a hour.

    Severe small fibre sensory polyneuropathy diffuse and autonomic

    Neuropathy. It fits everything I've been suffering with.

    He said it was neurological and Autoimmune.

  • mandy77480
    mandy77480 vicky89033

    Posted

    Hi Vicky

    I've had all your symptoms and many more.

    After 3 years 2 Neuro consultants an enormous amount of tests

    2 movement specialist the 2nd asked for a nerve conduction test

    to be done. The first by a technician the second by the

    consultant. He diagnosed me in less than a hour.

    Severe small fibre sensory polyneuropathy diffuse and autonomic

    Neuropathy. It fits everything I've been suffering with.

    He said it was neurological and Autoimmune.

    • mandy77480
      mandy77480 derek76

      Posted

      Hi Derek

      The consultant asked me to write him a letter stating all that I'm

      experiencing ,which I did. I've had it confirmed he did receive

      it and he his compiling a report to go back to my movement

      consultant.

      So I'm waiting on the next steps. I've had to push and fight to get t

      this far and its been a nightmare few years. I have so many things

      going on in my body so the diagnosis makes sense now.

      I would hope that the next step would be to find out which

      autoimmune disorder it is that caused the damage and treat

      accordingly. Then all the Autonomic problems be treated by the revealing

      consultants.

    • derek76
      derek76 mandy77480

      Posted

      We all have to fight to get to the right person and the right diagnosis.

      I wish you well with the treatments.

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