Help please I don't know what to do next.

Hi all, I have just joined this forum as I need your help please. I was admitted to hospital 13th April 2016 as my vision suddenly went funny and I was kept in until May 9th when I was transferred to neuro rehab till 8th July then sent home in a wheelchair with no follow up. I woke up after a couple of days in hospital with my left side paralysed, couldn’t speak properly, lost my swallow and was just very poorly. I had ct, mri, lumbar puncture and blood tests. Told they were normal. They hooked me up with a cocktail of drugs. Eventually my speech came back but I was on pureed food for weeks. It was put down to hemiplegic migraine which I have had since I was 10 years old. At no point did I have a headache or was I photophobic, and I kept telling them this is not migraine! They didn’t listen. I was a fit, healthy 38 year old woman, working full time in the emergency services and now I cannot walk unaided, have a catheter in(since April!), still cannot see properly, my left leg is weak and numb, my memory and cognitive function are impaired, I get tired easily, my speech slurs when tired or hot, I get prickly pin & needles in hands and feet which burn at times, electric shocks down my spine to my toes when I bend my head down, itchy in random places, muscle spasms in legs at night mainly, have mild dysphagia, left hand dexterity is not good and shakes sometimes, my memory is shocking, balance is terrible, especially in the dark or eyes closed in shower for example. Recently I have noticed a strange sensation around my chest where it feels tight like someone is squeezing me which is quite uncomfortable. A month after I left hospital my neurologist phoned me to say that my lumbar puncture was in fact positive for oligoclonal bands which meant I had inflammation within my central nervous system and was consistent with demyelation. Also he said my ssep was abnormal which showed prolonged signal to my lower limbs. But he said between him and his colleagues they did not think it was MS so he wanted me to go to London to see an MS specialist! I went private in the end but to the same neurologist my one had suggested. I was admitted for 3 days middle of December after a 30 minute consultation in October. I saw new Consultant neurologist at 8.30am for 5 minutes when I got there who said they will give me 3 days iv methylprednisolone to reduce the inflammation. Plus I would have repeat MRI and neurophysiology. I saw a physio half an hour each day who had to write a report plus an occupational therapist for 30 mins each day who assessed me too. Not long enough in my opinion. It just proved what I couldn’t do which I found very demoralising and frustrating. I was also seen by speech and therapy lady who diagnosed mild dysphagia & told me I need a soft - moist diet & to take all my tablets with yoghurt. I also saw a urologist who said I need a suprapubic catheter put in under general anaesthetic mid January. At 5.30pm on the 3rd day the consultant neurologist came in and said my mri is clear, my vep was abnormal and shows a problem with my left eye, my ssep was abnormal too showing prolonged signal to my lower limbs. Then he said I have a low - grade inflammation and it will be a long recovery, at least 12 months, but I should recover. He said he is “putting a ringed fence around MS” as my scan is clear. I have no follow up with him, still haven’t even received the discharge letter, and I am none the wiser for going all the way up to London. He didn’t tell me anything different from what I knew before, because he’d already said in a letter to my first neurologist about low - grade inflammation before he’d even seen me! All of my medical friends(some are surgeons) said to me they think it’s MS long before any tests came back positive. My symptoms are totally suggestive of MS so I don’t know why no one will commit to making the diagnosis. Obviously he is sticking to the MacDonald Criteria- as I have no lesions showing on mri it can’t be ms. From the neuro examination something is clearly not right. I have hyper reflexes yet some are diminished. I have spasticity and increased tone, I have extensor plantar response - all said by the doctor who did my neuro examination in London and he said “yes, that proves you have an upper motor neuron problem”. The lack of feeling below my tummy button worries me. I’ve had 8 bowel accidents yet I suffer constipation and think it’s the overflow causing the accidents. The Consultant said I need neuro physiotherapy not community physio, but no referral has been sent. The London ot said I need a lot more help than I’ve been getting plus an electric wheelchair so I can get out as I am a prisoner in my own home at the moment, yet my ot sent a wheelchair assessment off and I was given a self propelled wheelchair which I can’t even get over my front door! Sorry to waffle on but I’m trying to set the scene to see if any of you lovely people can help me please. My question is, what do I do now? Do I see a different neurologist who will listen to me and put all the pieces together? How long does methylprednisolone take to work and is it going to magically make me walk again? This is my 4th episode. After the last one in 2013 I was left with decreased hearing in my right ear and short term memory trouble. My 1st time I was in my 20’s. One of my medical friends said you can have no lesions showing on mri as there are deep parts of the brain it cannot reach. I asked the Consultant about this and he said with the new machine this is highly unlikely! So I’m left in limboland with not having a specific name for what I’ve got. Which in turn means I cannot get the help I need e.g benefits, blue badge, adapted car etc etc. I am probably going to lose my job as my future is so uncertain and I don’t know how much or if I will recover, plus by not having a “name” makes it all the more difficult with their policies! Any advice gratefully received. Thank you for listening.

Crumbs, poor you - that all sounds horrid. How difficult for you, being disabled so severely by whatever is the matter, but without a satisfactory explanation of what is going on. I wish I had something to suggest, but I don’t: just sympathy and hope that you get some clarity soon and that the news is good.


Thank you Alison for your kind words. It would just be nice to have a more concise answer from the consultant then I know how I can plan my life! I will keep you updated if I manage to get any further.

Thanks again.

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hi spillit

that just isn’t good enough of that neuro leaving you high and dry.

see your gp and tell him all your problems.

ask him to refer you to the continence team, now called Bladder and Bowel clinic.

also ask for a referral to Occupational Therapy. they can arrange for grab rails to be fitted in your bath/shower.

have you had the iv steroids yet?

they aren’t a cure but make you feel a bit stronger.

your GP is going to be an important part of your life.

s/he can help you to manage your symptoms.

good luck

carole x

Thank you Carole for your advice which I will certainly put into action. I find it amazing how much we are supposed to know to do ourselves, so I am grateful for your help because as you can imagine my brain is just one big bundle of fogginess right now. I am usually so on the ball which annoys me as I cannot seem to get clarity in anything I do. Nevermind, I’m taking one day at a time but still don’t get anywhere! It’s like trudging through mud with lead boots on. I have an occupational therapist but she has never done a house reccy to see what I need. I will make sure I list everything London OT suggested.

Thanks again for your support and advice, I really appreciate you all taking the time to help me.

Hi, I began reading your post with interest. But I’m afraid I couldn’t follow it and I do want to learn more. I will give it another go later on.

Please could you break your posts up into paragraphs and spacing?

I hope you aren’t offended by my asking.

Luv pollsx

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Hi Boudica If I use my phone (as I am today) to send messages, all the paragraphs are taken out! lol Maybe this what happened? Julie x

Hello :). I’m not much help with the limbo bit… but don’t let the lack of diagnosis stop you getting the help you need. My wife is " in limbo land", and has a blue badge and Pip. Closest we have to a diagnosis is neurological symptoms … x