Has anyone seen a neurologist? If so did anyone get any help from a neurologist? Just been as I keep falling over and have dizzy spells but have been dismissed stating it was a symptom of me/CFS and I should go for physio, pace and go for counselling. Feeling totally hacked off and going to make a decision once an for all to withdraw from the NHS system as far as possible. No help whatsoever 😰

14 Replies

  • Hi, I saw a neurologist and basically if it's not a neurological problem it's really not their field of expertise, I get the same, dreadful vertigo and dizzy to the point of falling over. I have had to face the fact that my life as I knew it is over, unless you can get a specialist in CFS/ME you just have to pace yourself and accept counselling if only to come to terms with having this dreadful condition. It's not the NHS that's at fault, it's that there is no cure for it. Take care of yourself as good as you would take care of a loved one, lower your stress levels, don't do too much. I recommend the CFS app it helps you to see why you're in flare ups and really helps you to lower your expectations of what you can do. Try it, it's helping me. xx

  • The world health organisation categorise me/CFS as a neurological illness so where else does it sit? I do understand your comments iresee however I would prefer someone to tell me perhaps that they didn't know, but would submit my symptoms to some central body who could collate and investigate further -no need for timescales or feedback but just to join up the dots. Too many bitty pieces of investigations going on which will not work and are of no use when the investigators are not given the full picture. Even the psychological effect of a GP saying to you 'we may find a cure in a 100 years' is so unhelpful to ones well being. In business, if we don't know the answer to something, we say so but follow that up to find said answer or articulate there is no solution at the moment but we will work towards finding one. Could doctors not be trained in this way rather than to write people off? It sickens me to think of a whole community of people offered no hope when there are on going studies and potentially investigators who may actually be interested. My husband also noted that doctors are very quick to blame everything on CFS/me. His words not mine were..'one day you may suffer some unrelated serious illness and they will just say it's me/cfs' . Sad times I'm afraid especially when with a little training and collaboration, communications could be improved and potentially some person somewhere might have the answer. I apologise for rant but so very upset having just returned from the appointment. Thanks for info of app. Off to see if I can download it.. Jax 💕

  • No help from a Neurologist but got great help from Dr William Weir, he's private but not rip off prices, scroll down there are a list of Drs on it, Weir is the only one I know anything about:

    See him in action here:

  • Thank you Raffs. I see Dr Myhills is on there too. I have read all of her books . I have since followed her CFS protocol in that I take most of the supplements she suggests and now follow a gluten and dairy free diet. I am better than where I was before starting down this route given I was bedbound for a long period of time. Over the past 10 years I have fallen over numerous times and suffered dizzy spells but more recently I have stabbing pains in both sides of my head but mainly on my right side. I have also had a couple of occasions of what I can only describe as full body paralysis which were today completely dismissed by the neurologist who, apart from doing the routine reflex tests, hardly looked in my direction as she was too busy typing her notes into her MacBook. I am not aware that these are routine symptoms of me/CFS but seem to be passed off as such. I haven't watched the you tube video link yet but will do so in the morning. Thanks for your reply. I certainly will look into dr. Weir. I am happy to pay as it seems the only hope I have of moving forward. I'm afraid I will never accept that this is as good as it gets which maybe is my downfall, but I feel you have one chance in life so I'm not going to give up in my quest for good health. Take care Jax 💕

  • Ps Raffs I take magnesium glycinate nightly for restless legs and chest pains. I cannot do without it. Just read your last message from a couple of months ago 😊

  • I contacted Dr. Mark Buchfuhrer, (he of told him I was taking Mg and he told me it was of no benefit to RLS. I had been taking Magnesium & Calcium and stopped, can't say I noticed any change in RLS. I HAVE noticed when I stopped the Iron for a couple of nights but I'd really need to do a proper trial to see what I am actually getting out of it.

  • The full body paralysis could be sleep paralysis, it happens when you half wake from sleep but your body is still paralysed, (our brains shut off our body so we don't act out our dreams). I get it often and it used to be very frightening. Sometimes it still gets me - I didn't realise I had fallen asleep and couldn't get the attention of my Mrs who was beside me on the sofa! Oh the fun to be had with it!!!

    I have no knowledge of Dr Myhill but I have vague memories of someone on here mentioning her, (and the fun of memory problems too :) ), maybe they'll pop on here and add some input.

    You have nothing if you don't have your health - something my parents used to say to me as a young person and I never understood - until I lost my health!

    Fair play, don't give up, I know I wont!

  • Definitely a case of not one size fits all and what works for one won't necessarily work for others. There is a lot of personal trial and error.

    Re sleep paralysis, I did used to suffer from that frequently when I was younger but not had an episode in a very long time. Both recent occasions where I felt paralysed were during the day when I was wide awake and busy. The first time I was eating lunch which was a plain old salad which I had eaten many times previously and since and the second just watching tv. Both episodes lasted over a minute and were extremely frightening. I did visit my go who told me that it was not a stroke but her diagnosis was it was likely a panic attack. Not convinced of that at all! Again I have previously suffered panic attacks but most certainly not of this fashion. Bizarre state of affairs. Good luck in your quest for good health. Hopefully one day we shall be restored to full fitness 😬

  • I have seen 3 neurologists over the past 5 years and apart from ruling out MS I was told to pace myself and basically get on with it. Like you everything gets blamed on the ME. It's very hard to deal with. I hate going to the GP because I have had the NHS treatment at Broadgreen CFS clinic in Liverpool and that's the only treatment available. I keep looking on the internet for any new treatments hoping there will be something that helps. Forums like this help a lot especially when you need advice from a fellow sufferer.

  • Thank you PatDoyle. Isn't it so frustrating? 😰. I had a physio appt this morning for right hand side weakness but have stubbornly cancelled it and withdrawn myself from the system as a result of yesterday. So sick of the lack of understanding. I have seen the one and only CFS nurse in Scotland for counselling on three occasions and he was really good to talk to. He is however the only one and only service offered in my area hence my own search on line for better health. I research continually and do know that some people who see neurologists are taken seriously and offered trial medicines. Just need to stop expecting help from my NHS area and continue on my own path. I realise no doctors are taught in medical school about me/CFS and if they are it is just following old guidelines. Thank goodness we don't live in the early days of last century as we would be institutionalised 😰. Seemed to have happened frequently to people when doctors did not recognise their illnesses. Keep on your mission for good health as I will do for mine. Good luck Jax 😊

  • Look into functional medicine. It's the only thing I found that helped. I got rid of my severe crippling fatigue and dizzyness etc thanks to them . Working on healing neuropathy now. I had no treatment for years and multiple deficiencies, hence why I got worse and neuropathy started . I did see neurology who told me to stay on b12 injections. The b12 test isnt very accurate. Read @kat7777 post on the real causes of cfs, also my response and Dr myhills books. Diet is very important too.

  • Hi thanks. I follow Dr Myhills protocol and have read all 3 books which have been a lifeline and I have gone from being bedridden to upright. I am grain, dairy, legumes and sugar free and now no alcohol. I take levothyroxine and get b12 injections every three months from doctor but maintain my own b12 supplements daily along with coq10, magnesium, d3 and k2, l carnitine and b complex. These are spread out during the day. I take no preservatives but still continue to have a burning feeling in right side of brain and like electric shocks in my head. I have disturbed eyesight when under minimal stress and fallen numerous times and injured myself numerous times. Not sure what I else I can do now. Am running out of ideas. Will check out @kat7777 thank you 👍

  • That's great that you have made improvement. I know that these protocols take time to work. Although I have made progress with fatigue, dizzyness etc I still have neuropathy and chronic infections. I was ill for so long before I discovered functional medicine. The longer you have been ill, I believe the longer it takes to improve. I'll hang in there though as I feel hopeful. I have heard allergies can trigger migraines. I really hope that you continue to improve Jax777

  • I was seen by lead neuro and he diagnosed CFS & Fibromyalgia, told me to pace myself yet a rheumatologist told me to push through the pain and exercise. Thing is I knew something wasn't right as I had other symptoms thst wasn't related to either problems - I contacted the centre of excellence for Behçet's disease in Birmingham with photographs of my ulcerated head and mouth. Turns out I have this rare autoimmune condition as well as the CFS and fibromyalgia.

    I'm annoyed as I was labelled a migraine sufferer brought on by medication overuse. I was took off all meds and within 5 days was dying with the pains, I collapsed and from that day my right side is pins and needles constantly. I have been prescribed gabapebtin and was sent for MRI and nerve conduction study they came back normal , so you are discharged.

    I now battle everyday with the 3 illnesses taking morphine, gabapebtin, tramadol, steroids ,naproxen , lansoperzole and zomorph. In addition to steroid scalp lotion and movelat gel.

    So my neurologist said I needed to pace myself or I'd end up bed bound , the rheumatologist said exercise , his boss said no! Pace yourself. And I did the leg work and found my mystery illness and rheumatology are awaiting my next visit to see if I was right. Yes I was right! When it's our bodies , you tend to know what is and isn't right.

    Thank goodness I did investigate as I've suffered all my life with what I now know is Behçet's disease a very rare illness.

    Which has fatigue as a symptom too.

    So when I get fatigued it's very very serious, it involves blood vessels everywhere in the body, many Doctors's haven't dealt with it, I am the only Patient under my health centres care. So I am special.

    I am buying my GP a proper medical book on behcets as a Christmas present!

    She has been so good to me, and beleived in me when I said something wasn't right. She supported my referral to the centre of excellence and was very impressed when I was diagnosed.

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