August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
Discuss the article on the Forums.

Infectious diseases specialist

Discussion in 'ME/CFS Doctors' started by jenny39, Jan 6, 2018.

  1. jenny39

    jenny39

    Messages:
    32
    Likes:
    43
    I am being referred to an infectious diseases specialist after 3 years of trying to get rid of an infection pseudomonas aeruginosa. I also have epilepsy and anm under a neurologist, this was caused by the infection and prior to that had brain surgery which had made things more difficult in getting diagnosis. I caught this infection when I had appendicitus and complications with cellulitis spreading down leg. I got antibiotics and thought that was the end but symptoms came back gradually. I now will need antibiotics every 3 months and my nerves will go dead but severe pain on me with headache and can feel around brain irritated. I am looking for a specialist that possibly UCL London so they can see my history of neurology reports. I was under an ENT at Greys inn Rd and had no luck with them as wouldn't believe infection was more then a basic ear one. Since I have had loads and neurologist and GPS all believe it started from previous operation and spread with ears last.
     
    Silence, MEMum and pattismith like this.
  2. andyguitar

    andyguitar Senior Member

    Messages:
    487
    Likes:
    642
    South east England
    Sounds like you are finally going to get the expert advice you should have had years ago. Good luck with it.
     
    jenny39, *GG* and MEMum like this.
  3. jenny39

    jenny39

    Messages:
    32
    Likes:
    43
    I just hope they are not going to turn me away like the ENT hospital has done previously. I have infection at moment so am on antibiotics but by the time I get a referral I will look alot better. I think I will ask to go to hospital for tropical diseases as they will then see all previous tests at national hospital, Royal London hospital, Grays Inn Rd as hospitals are all UCL. I am currently on ciprofloxacin and had around 4 months worth altogether so obviously cant get rid of it. If I cant get something here then I will just give up.
     
  4. andyguitar

    andyguitar Senior Member

    Messages:
    487
    Likes:
    642
    South east England
    Be firm with them about it. Point out the fact its been going on a long time and is making life very difficult.
     
    jenny39 likes this.
  5. jenny39

    jenny39

    Messages:
    32
    Likes:
    43
    andy thanks I will do and keep you updated on what happens. Problem I have had is the neurology hospital wont put it in writing but told me in person that infection is cause probably because I had brain surgery at that hospital about 18 months before I had appendicitis at my local hospital I then got infection after complications. I presume its from there as I had cellulitis and they guessed the antibiotics. When I have been back there they just turn me away and refuse ti treat as my bloods are showing normal or nothing significant. Lets hope I get to see a decent specialist.
     
  6. Hikaru

    Hikaru

    Messages:
    39
    Likes:
    77
    Finland
    I hope you finally get the help you need, I'm waiting to hear back from this kind of specialist as well after I tested positive for EBV.
     
    jenny39 likes this.
  7. jenny39

    jenny39

    Messages:
    32
    Likes:
    43
    Hikaru thank you I have just spoke to referrals today who have said that it will be UCL hospital that I am referred to so at least they will have access to all my previous hospital records at the national hospital fot neurology, Grays Inn Rd ENT. I think it is the hospital for tropical diseases.
     
  8. jenny39

    jenny39

    Messages:
    32
    Likes:
    43
    I have got my appointment to see a Proff D Mabey or one of his team at the hospital for tropical diseases on Wed 24th Jan. I hope I can get some other treatment.
     
    pattismith likes this.
  9. jenny39

    jenny39

    Messages:
    32
    Likes:
    43
    I had my appointment with Proff Mabey and he was shocked I hadn't been seen before and had been ill for 19 years since I caught pseudomonas aeruginosa. I have had around 4 months of antibiotics and a GP gave me a 10 day course while I waited for this appointment which came very fast. I told him I had took these and he checked my ears as on antibiotic drops. He then done bloods even though I said all bloods have been normal other then stuff such as inflamed liver and vitamin deficiencies such as folate, vit d and b12. I said unless anything has been missed but you have all my bloods over last 20 years from neurologist as same hospital group. If bloods are normal I will be discharged even though I stated in a few weeks I will be in need of antibiotics again as it looks like cipro has got rid of it but hasnt. Do these specialists ever listen??
     
    pattismith likes this.
  10. jenny39

    jenny39

    Messages:
    32
    Likes:
    43
    I just got my letter back from the hospital for tropical diseases, at the bottom of the letter he said that the tingling in the hands arms and below my ribs were unusual symptoms of a bacterial infection. I had told him every nerve in my ribcage not below the ribcage stung and all down arms and legs down to the feet. It just proves they dont listen to you. All bloods were normal which I stated had been normal all along I said that will show as normal and then said this confirms there is no ongoing infection. I will be back at my GPs withing the next 3 months in need of antibiotics again. I feel like emailing this hospital and telling them to correct the information.

    I feel like asking my neurologist to refer me for a spinal tap at my next appointment as this infection started after picking it up in hospital and then I had bladder infections, MS hug like pain which I now know is the start of pain I was describing which moved further up the rib cage. The nerves in brain stem I could feel inflamed then the neurological symptoms from the brain infection. I had sinus pain then throat and ears were last and both flared up severely at the very same time so to try and put it as if its a simple ear infection like the previous ENT specialists have and now the infectious diseases specialist.

    They just dont like it when they dont know the answer is what I finally realised. At least my neurologist finally admitted he was wrong and another admitted he didnt now whet was wrong before him.
     

See more popular forum discussions.

Share This Page