I’ve just got my neuro appointment through for 25th November. I feel a weird mixture of relief and nerves. Has anyone got any tips to prepare for a first neurology appointment? I’ve no idea how long it will be and wish to get the most out of it.
Glad you’ve got a date at last. I hope your Neuro is as nice as the one I saw last week.
The only advice I can give is try and relax and answer his questions as fully as you can. I also took the advice of lots of lovely people on here and took a list of symptoms as a memory jogger, and actually referred to it during the appointment. My hubby asked him if he wanted to keep the list at the end of the appointment and he took it willingly. I did say something along the lines of “Gosh, that must make me look like a complete hypochondriac” but he dismissed my comment, saying it was really helpful. As we left the room, he was sat reading the it!
So glad you’ve got your date at last. I was dreading my appointment, but it turned out to be a very positive experience, and I have already received an appointment for one of the tests he wants me to have - for this coming Saturday, appointment letter dated the day of my appointment (from another hospital, too!). Very impressed, so far!
Just read this post from the begining Reikiblosom. How dreadful for you - the wait must have been agonising. I’m in the same position really but think I’ve had the symptoms for over 10 years since the birth of our fourth child.
About 4 years ago it became too much, googled it and came back with MS - I was working full time in a charity shop which entailed a lot of physical work. Went to the doctors and a subsequent blood test showed elevated liver enzymes and I was diagnosed with autoimmune hepititis - lovely! Became super healthy, only drinking on mine and husbs birthdays, eating all the right foods. But nobody could answer about my tingling legs!! A minor symptom after all. However the bouts of fatigue were and still are horrendous. It felt as if I had the biggest hangover of my life. If somebody put a hundred pounds on the other side of the room I would be unable to get up and collect it.
Add to this a husband who has no empathy whatsoever and here is one very lonely frightened woman. I did think about MS at the time but dismissed it with my liver diagnosis. Then came the headaches and I was really, really lucky to see a new very young GP. He listened very carefully to me and sent me for an MRI scan. This came back as - GO TO SEE A NEUROLOGIST NOW!!!
Then trying to get an appointment was a nightmare. But eventually I managed to find one 25 miles away but within a month. This is now next week away and believe me I will be so happy to be diagnosed. It means I am allowed to be poorly and won’t have to be dragged out on a three mile walk (fresh air is good for you).
The moral of my story! It is our body and sometimes we know it better than the medical profession! I do hope you have had some more results. Do let us know!
Sam x
Purpledot - thankyou for the advice and words of support. I have my brief symptom list and intend to take copies of my diary for the neuro to keep. Sam - it’s been an odd long wait. Sometimes I could go for long periods brushing the niggly symptoms under the carpet, but I feel that I’ve known something wasn’t quite right for a long time. I know what you mean about husbands with no empathy. I’m often in the same boat…though mine does show a little consideration from time to time. He complains less these days when I say I’m tired and stick up for myself by refusing to go to the park in the rain. Him and sprog can get wet, fine. I know I’d regret it later if I went. I wish you luck with your appointment, though from what I’ve read on here, don’t expect an immediate diagnosis. They will do what they can. Of course you are ‘allowed’ to be poorly. Are you someone who can say ‘No!’ comfortably, or do you need to learn how to do this? I’m getting better at defending my boundaries as I practice saying ‘no’ (and I get plenty of opportunities 
I’ll keep you posted. I may go for an eye test soon as something isn’t quite right, though my focus is good and I don’t need glasses. Occasionally my eyes feel very slightly out of synch with one another. Take care, all xxx
I went for an eye test today and told the optician about everything I could think of. Apart from a very slight difference in my eyes, I don’t need glasses. My peripheral vision was checked as that can pick up neurological problems but that too was fine. And of course, the side to side wobble didn’t happen during the examination. I mentioned that I had a neuro appointment and from what was said, got the impression they might have referred me anyway. So, good news. Hearing test up next. Wonder if they’ll find anything there?
To add to the fun…suddenly stopped taking the Betahistine due to a sudden bout of sickness and diarrhoea. I got a callback from the GP who reassured me it’s OK to stay off them until I see my other GP in a week. I’m not sure they were having an effect anyway. So, I’ll see how dizzy I am when I start eating properly again and can rule out lightheadedness from lack of food…
Oh, and because of that I’ve had to postpone the hearing test. It’ll get done, eventually.
Went to see my GP again today. He’s taken me off the Betahistine and listened to my latest symptoms. He is quite sure that I have M.E. / Chronic Fatigue syndrome but I won’t get an official diagnosis until I see the neuro. A label of M.E. still doesn’t feel right to me. In fact, when I went for a shiatsu treatment today, the practioner didn’t think I have M.E. either. What did affect me from my appointment was when my GP referred to it as a disability. He was very good at explaining it and I did feel reassured that he was doing his best to explain my symptoms (even though my gut feeling doesn’t agree), but I walked out of there a little upset, now wondering if I am technically disabled?! I’ve re-made my hearing test for next week. No further help on how to manage this fatigue and dizziness, so roll on November 25th…
Hi Reiki
I have a longstanding diagnosis of ME/CFS, but, like you, have never completely agreed with it. I also have a diagnosis of Fibromyalgia to add to it, but don’t really have complete faith in that either as I don’t suffer the chronic, debilitating pain that is supposed to be its defining symptom.
I can totally understand your reaction to your GP suddenly referring to your ‘disability’, as this is not a word anyone wants to hear in relation to their own health.
On the plus side, if it does turn out to be what he thinks, at least your GP seems to understand it, and believe in it. You’d be surprised how many don’t!
When I saw a Neuro a few weeks ago and told him of my ME diagnosis, I told him straight that I had never been 100% convinced of its accuracy, and, although he didn’t make any direct comments, he nodded wisely (!), didn’t argue with me and moved on very swiftly to something else. I was half expecting him to terminate the consultation there and then, declaring that everything could be explained by the ME and that there was nothing they could do to help me. The fact that he didn’t was a revelation (and a first) for me!
Although my long journey through Limboland may end up back at that ME/CFS / Fibro diagnosis, I am now determined not to be dismissed until all other avenues have been explored, and refuse for the first time in over 25 years to be fobbed off.
Reiki - it may well be that you will end up with confirmation of your GP’s diagnosis, but please make sure all other possibilities have been thorougly explored first…a diagnosis of ME/CFS is often referred to as a ‘lazy’ diagnosis, so don’t be fobbed off!
In the meantime, it is just a label, so nothing as changed since before you saw your GP. Please take care xx
Thanks, Purpledot. My shiatsu practitioner (who is also my Tai Chi teacher and someone with a great deal of experience) also said to me that if I’m given a label of M.E. or fibromyalgia, to ignore it. I’m certainly not accepting it. The GP said it was ‘a diagnosis of exclusion’, which just sounds like a label they use when they can’t find proof of what is wrong. I’m beginning to think that M.E., fibromyalgia and ms are dis-eases that border on the edge of our current understanding if the human body as just a physical, biomechanical machine. However, if you take a holistic perspective, you start talking about the energy bodies in addition to the physical. In my personal experience, right now, I feel like parts of me are trying to go in different directions. Emotions and thoughts and beliefs and habits and intuitions are all pulling in different directions with my physical body struggling to cope with the confusion. I wouldn’t be surprised to find that I’ve short-circuited my nerves and created lesions. I’m not surprised, really, that I seem to be chronically dizzy…I’m still spinning mentally and emotionally after the past five (at least five) years of childbirth, sudden hysterectomy, near marriage breakup, starting two small businesses and discovering that I’ve been bisexual all along. Yes, its been a busy half-decade. No wonder I feel broken, even though I love motherhood, I’m happy with just one child, my marriage is better than it has been in years, I absolutely love my work and I am less embarrased about admitting to fancying certain actresses lol So I’m firmly set upon this journey now. All I can do is keep asking questions until I get the answers I need and keep asking for help as and when I need it. I value your responses. I know I’m not alone 
I am not sure how professional it is for a shiatsu / tai chi teacher to tell clients to ‘ignore’ diagnoses made by a neurologist?
Anonymous, usually I’d agree but under the circumstances, I know this person very well and I was being addressed on a personal level. Sometimes a label can interfere with healing and in this instance, both of us felt that M.E. is not what I’m dealing with. If you understand the metaphysical idea that thought creates reality, you’ll get where I’m coming from. On the other hand, I’m well aware that being quite convinced that what I have is ms, I’m possibly not helping myself. At this point though, I need an answer that fits. Like many on here, I am trying to understand and deal with the experience that my wayward body is giving me. My point of view on life is an ever widening one and I don’t expect everyone here to agree. Medical science, in my opinion, only has part of the answer. My personal journey is very much about self-discovery alongside seeking a medical diagnosis. I would never choose holistic therapy over allopathic (conventional medicine) methods but will always consider complementary therapies alongside treatment from medical professionals.
Today’s fun new symptom: a twitchy chin. It started when I tilted my head down to my chest for some reason, then stopped after a little while. A bit later it did the same again so I deliberately experimented and found that that position plus moving my chin keeps setting it off! An annoying tic but it does seem to go away by itself.
Hi Just read all you messages what a long process you have had. il just tell you a it about me, 5 years ago I started getting really dizzy, vertigo, nausea, balance problems migraines, headachs etc. after being referred to ENT, physio and then a neuro-otologist, having 101 dizzy tests that were horrible I was told I had MAV which is migraine associated vertigo and peripheral vestibular hypofunction. Was on betahistine and stemital and had physio, dietician, allergy clinic and after 2 years was discharged as nothing else they can do. But was still getting symptoms daily. Then in 2010 I had a car cash n after a year of pain, fatigue, aches, memory problems, word mix up, weak muscles and more, I saw a rheumy and after MRI, ct, X-ray, nerve test was told I had fibromyalgia, discharged again as nothing they can do. So now 3 years later symptoms got worse n lots more appearing and doc just giving me more n more meds I have now been referred to a neuro. But that’s only after 3 weeks ago of getting blurry vision, seeing optician, being told I have optic nerve swelling, seeng eye clinic the next day, going AnE as high blood pressure too, having urgent brain MRI the next day n no tumours, blood clots found. I have finally been refuted to neuro n my apt is in less than 3 weeks. It’s bad how we have to force our doctors to do anything n we are just left to live with our symptoms, I really hope you get some answers once you see neuro. Victoria x
Hi Victoria! Firstly, thanks for reading through all that. It just made sense to have one thread to use a bit like a mini blog. You’ve really been put through the mill, it must have been so scary and stressful for you 
I do hope that the neurologist you see can really help you. Well, today I finally went for my hearing test. I wasn’t too impressed with the nurse who put the headphones on me before explaining what to do. Good job I could still actually hear her. I apparently ‘passed’ the test, even though I noticed a distinct difference in my right ear. The lower notes I could only just perceive whereas in the left ear, it was quite clear. I’m seriously considering going to get tested elsewhere (there’s a hearing centre associated with the opticians I use). One of my possible symptoms is that sometimes I have difficulty understanding lower pitched voices. I can’t work out if its my hearing or the process by which we understand the sounds we hear. Ah well, another thing to tell my neuro…
I have trouble with lower pitch voices too Reiki funny what you say about noticing a difference but not one that shows because when I went to get checked with eye paib and blurred vision they said it was fine on reading. Now yes I could make out the letters but with difficulty and one eye waa more blurred than the other but not that blurred it obscured it. Took me twice as long to read the chart with blurry eye Axx
I’ve been busy this last couple of days trying to help hubby who has put his back out quite badly and also taking care of our daughter. I’m pretty pooped, so I didn’t notice banging my hand on something… I’ve just found a bruise on my left wrist, below my thumb. I don’t remember banging it and it definitely wasn’t there this morning. The odd thing is, I can’t feel any pain when rubbing over it or pressing it, so understandably (but in no way usefully) I am now worried about my hand. I did a really crap job of applying nail varnish the other day. I really hope my co-ordination isn’t getting worse as I rely on my hands for my work. It’s so easy to get sucked into your fears, isn’t it? Especially when your own body, that you took years growing and getting co-ordinated, suddenly does things that you are not in control of. It is so frightening receiving all these sensory messages that you can’t make sense of without help. I’m feeling all this even though I know, compared to some, my symptoms are rather mild. Well, at the moment. If my body is talking quietly to me at the moment, I hope I can answer it before it has to shout.
I woke up twitchy, a bit stiff and in need of a bath today so I filled my tub with hot water and plenty of bubbles, prepared to spend time having a good ol’ soak. However…I noticed that my left foot (especially the sole) wasn’t registering the heat as much as the right one. I even crossed my legs to see if it was hotter on that side. Nope. Then, I started feeling a bit dizzy. Oh, the warmth felt good on parts of me, but I couldn’t stay in for long. When I got out, I felt exhausted. Drying myself was hard work. It knocked me out so much that I’ve had to stay at home whilst hubby and littl’un go out. Maybe I ought to stick to showers and just warm baths for the time being…
Oh, how disappointing for you Reiki. I haven’t had a bath for a few years now as they make me feel so ill, both during and after. I have to have showers now, but even they take it out of me somewhat. I must admit I really do miss a lovely hot, bubbly bath.
Well, at least it is more information to present to my neurologist. I find it hard some days, being undiagnosed, to explain things to family and friends. The basic couteous question ‘How are you?’ is so difficult to answer. In everyday family life too, I just wish I could explain things to people, when I feel that I can’t join in. So many times I’ve wanted to blurt out ‘Because I think I have ms!!!’ Explaining symptoms as and when an explanation is needed just doesn’t quite do it. ‘I’m really tired/pooped/worn out’ is beginning to sound like an excuse , even to me! I know it is not. I know this is fatigue. I must admit, being able to tell hubby 'well, the doctor thinks it might be CFS/ME has been a bit of a help, but without an official diagnosis I just can’t say to my family ‘here’s what’s happening to me. Look at this website. Read this leaflet. Please understand.’ Another fine day in Limboland…