Wow ! Head battered !

Hi all,

Three years ago I went through symptoms typical of Encephalitis,with an aftermath of rather MS type symptoms, was told probable Encephalitis five months into recovery, left with some permanent spasticity/ balance, tinnitus, cognitive probs and finally put down as FND a year later. I had an MRI in early illness that was clear and was thrown out to psychology with no medical support. An EEG at 10 months ( which was very late as was supposed to be at the same time as MRI ) which I was told normal but later found out had abnormal slowed waves. No further tests or physio was offered.

I did manage to get back to work at six months ( cleaning ) on greatly reduced hours and remained relatively stable for 2 1/2 years.

Three months ago, I had a severe UTI which rapidly progressed into sepsis, prompting a two week hospital stay on IV antibiotics and oral follow up. During this time , I went through many of the symptoms I had three years ago plus some new ones, which has lasted around two months. Hospital refused to acknowledge this, treating only the sepsis. I am now in month three and still struggling with worsening of spasticity and weakness, new spasms in back and right arm, permanent sweating, huge post exertional fatigue and greatly slowed passage of digestion, causing a weight loss as I feel bloated/full and have little capacity for bulk.

After 3 visits to GPs, I finally got someone to listen and was put under investigation, suspecting MS.

Today, I have gone back to get blood test results.Basic bloods are all fine. I was then told that because nothing was showing on bloods that the GP was unable to help me. To me , that is like saying ' You appear to have a broken leg but your bloods are just fine so we will not bother to x ray , just carry on as you are and see how it mends ' !

What happened to 'under investigation' ? I suspect that someone in authority at my health centre has pulled the plug. Shame, as my GP was enthusiastic and in agreement with me on suspecting an underlying auto immune cause at the previous visit.

I have to admit I am gobsmacked, feeling like the rug has been pulled out from under my feet.

Not sure where this leaves me - I have a way to go before achieving my previous level, independent of my stick so cannot go back to work yet and am also dealing with other new problems that generally make me feel ill and exhausted a lot of the time.

Wow, NHS, just Wow ! Unbelievable.

Angela x

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7 Replies

  • So sorry to hear this Angela, I suspect that you and I are just two of so many people that are ignored by the NHS. Physios and podiatrists have been my life savers. Three years ago they referred me to an orthotist and I was prescribed AFOs which give me a near normal gait and lessens the fatigue as I have double foot drop. It is my opinion that the FND diagnosis and following lack of care saves the NHS a lot of time and money. It makes me wonder how many of us have been misdiagnosed I.e. fobbed off.

  • Thanks Thirza,

    I know many others have been left in the same boat and agree wholeheartedly with the time and money aspect of this convenient umbrella term.

    My right foot drop came back appallingly during relapse and still flops a lot when tired. I did ask about a leg brace to hold the weak right leg up, thinking it might be a way of getting back to work - GP was not in favour.

    I currently use a stick as support for this. How did you get referred to physio ? Was it private ?

    Neither neuro nor GP's will refer me.

    Heck, I'd fashion my own brace if I thought I had the skill ! : ) x

  • Hi there!

    I was referred by my Neurologist to see an Orthopaedic.

    I have spasms in my right leg and I tried Physio which

    wasn't much use as the Physios didn't know much

    about FND.

    The Orthopaedic suggested I try a leg brace.

    I now wear one which does

    help to stabilize it.

    Ask your GP or Neurologist

    to refer you to see

    an Orthopaedic.

    Good luck!

    Happy New year!!

    Kim x

  • I asked at my local GP surgery for a physio referral. I believe that other surgeries also operates a self referral system for podiatry. The podiatrist explained what was happening ( never had such help from neurology) to the muscles in my legs and built up the underside of the AFOs to compensate for my feet and ankles wanting to roll outwards.

    Also have a look at the Ober Foot Drop thingy on Amazon. It is a clever device that fits neatly around the ankle with a little strap that connects to your shoe laces. They don't provide enough support for me for walking outside but are brilliant indoors to give me a break from the AFOs. They are not too expensive either and have good reviews from other people.

    I hope you can get some help this way.

  • Yes I hear you. Your story and pattern of events are very much like me. I believed in the end that I was being maybe hyper vigilant to my sudden onset of illnesses. I or ta always told myself I'm worrying for nothing.


    I ended up near dead in hospital with severe malabsorption due to mild lymphoma.

    Went on watch and wait as it is classed as too mild to treat. From there I got organ breakdowns and illnesses that were just way out there. With this happening and my persistence, I was discovered having 6 lesions on the brain. Minor strokes from body struggling and massive high blood pressure from it.

    In summary, be persistent. With the same doctor. Just keep returning nd insisting investigation. It's the only thing that got my severe FND diagnosed in the end. My doctor is very attentive with me know let me say.

    Good luck stay strong and determined.

  • Question...are the lesions in your brain from FND?

    I feel like I have been so persistent, but seems last appt neuro is dropping the ball. NO further tests or explorations..even when he couldn't explain muscle atrophy in hands, upper right arm and right calf. I was disappointed and frustrated as i had more hope with him. Am now waiting to hear if my PCP will make a referral to an endo.

  • Angela,

    Sorry. Yes, this is just so unbelievable, yet it is happening over and over to so many of us. How can this suffering continue without proper help? I feel for you as this is so difficult. It is actually unacceptable, yet has to be accepted.

    Sending positive thought.


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