Ok. Had my neuro app't today. I made a big list of new, worse and ongoing symptoms for him to save time (10 minute slot, gogogo).
The new symptoms were:-
Dizzyness. Like the ground is shifting under my feet, even when sitting down.
Shortness of breath with chest pain, can't seem to get a full breath.
Headaches which I don't normally suffer from.
Worse symptoms were:-
Tingling now in both hands and feet and is more noticeable. Feels like circulation has been cut off temporarily and is returning.
Buzzing vibration in left foot and right side now also in right foot.
Sense of taste and smell not very good.
Problems with maintaining balance, especially in low light conditions or when eyes closed. Have to leave hall light on at night in order to be able to use toilet. Always bumping into things.
Eyes – sensitivity to light, particularly at night. Blinded by oncoming headlights whilst driving. Causes pain in muscles behind eyes (particularly left eye). No longer drive after dusk if very tired. Some loss of colour from left eye. Itchy, dry eyes. Vision has become much worse over the past few months.
Walking has become more difficult. More of a coordination problem than a pain problem. Walking very slow. Bump into things and overbalancing.
Increasing difficulty with word finding ability, short term memory, concentration, speech slurred when tired. Often get wrong words& temporary dyslexia with words and numbers.
Problems with swallowing when tired. Feels like something is stuck in my throat (particularly when laying down at night). Sometimes feel like something is crawling up my throat which makes me cough.
Pain in neck and top of shoulders is much worse. Neither cocodamol nor paracetamol+ibuprofen help.
Tinnitus is worse and now sometimes in left ear too.
Difficulty with grip – no strength in hands.
Orthostatic intolerance. Cannot remain upright or seated for long without feeling very unwell.
Extreme fatigue following mental or physical exertion. May not be the same day but the next day or sometimes 48 hours later.
Itching. Like insects crawling over my body when I’m in bed. Also intense itching of scalp.
Difficulty hearing/understanding what someone is saying to me when there is background noise.
Insomnia/too much sleep.
Muscle pain/weakness – burning pain in muscles (particularly arms). Weakness in hands and arms. Poor grip.
Problems with temperature – too cold then too hot.
Sudden jerking of hands when trying to perform fine movements (spooning coffee). Trying to get change out of my purse. Twitching of legs at night sometimes wakes me.
All symptoms made worse with heat or exertion.
Basically, I am not going to get my LP yet (9 months now).
I asked him for a brain and spine (further problems with my walking) MRI with contrast but apparently contrast is only used where there may be a brain tumour and is very toxic stuff and spine at this time is not relevant.
He is going to refer me for an MRI and if it doesn't show the lesions required to diagnose me (hopefully not the out of date Barkoff criteria he was using for my first MRI) then he will refer me for a LP at Canterbury (he initially suggested London but Canterbury is much closer to me so I mentioned it) and may refer me to the MS specialist there. :-D
IApparently my shortness of breath and chest pains etc. and my sense of taste/smell are all to do with my smoking (I smoke 0.5 ounces of tobacco a week (less than one packet of cigarettes a week) and when I gave up for a few months a short while ago, it made no difference).
My severe neck pain is a muscular issue and should be treated with hot/cold packs and my support pillow maybe rather than drugs. His specialises in pain so I'm going to see my GP about this. Hopefully I'll at least get an xray. I do have a long neck and have had problems with it over the years but would like some resolution with this.
Problems with being blinded by headlights and positioning on the road in the dark were put down to light-sensitivity. I have had this for 8 years now and have been able to drive safely. I don't think I can do this anynore as I wander on the road.
He asked why I had a problem with standing and sitting and I said that if I was standing or sitting for long I started to feel very ill. I feel sweaty, have a churning feel in my stomach and feel as though I am either going to either throw up or keel over. I feel a very strong need to lie down. Can't queue at shops or washup etc. Apparently this is not symptomatic of MS, but, I told him, it is very symptomatic of ME, to which he said that ME and MS are completely different. Well, not in my book they're not.
Sorry guys, very much rambling here but this has screwed up my plans. I thought 9 months for an LP was bad. Hoping Dr Redmand (MS specialist in Canterbury) is good because these 10min packitallins are not good for me at all.
Sorry it was such a long one. BTW, I've been ill since 2004 and would really like to get a label and treatment so I can go back to some form of working.