Nov 03, 2010
29th August. Twitching in legs, back and abdomen, whenever I relax or lie in bed, and a host of 'buzzing'/vibrating/electrical/wobbling sensations and 'internal tremors' - especially in chest, neck and throat. These appear on an off at random like someone switching on an electric current.
I think that funny feeling I had in my chest that day when I had the apparent heart attack was this. I remember saying to K that I couldn’t exactly describe it but 'something isn’t right'. That was in January. It's disconcerting. I don't know what to think - I am worried that it is some serious neurological problem such as motor neurone disease – although trying not think the worst. It is so wearing as it's been going on so long and I think I and everyone got so hooked on the idea of something wrong with the heart that these sensations – which I couldn’t exactly describe - got obscured. And indeed the symptoms were rather vague and intermittent at first, whereas now they are constantly pressing themselves on my attention.
This latest batch of strange symptoms – the fasciculations began on 23rd July, the day I was fitted with the 48h Holter monitor (ECG) to try and see what was going on with the heart rhythm. Could it be linked to that? Could the electrodes have somehow started something off in the nervous system? I also thought it might have been exercise as I’d been doing fitness DVD, which includes weights work, and had done it two or three times that week in an effort to ensure that the heart rhythm that I’d been feeling did show up.
Am concerned that people are getting fed up with me as I seem to be producing first one symptom and then another. JF more or less said it was health anxiety yesterday. Her brother in law is a neurologist and she said 80% of people he sees with headaches and other neurological symptoms have nothing wrong but that GPs over-refer and that encourages anxiety. I deliberately haven't looked up the symptoms as I don't want to scare myself. She meant well I know because she got it into her head she had lung cancer recently and I think she just wanted to put the point to me that I was dwelling on things because of what happened at the beginning of the year. But I just felt I'm wearing other people's patience a thin and I think the 'model' of illness we all have is that you have a symptom, go to the doctor, get it diagnosed and then you get it treated, but this has just dragged on and on with the symptoms getting ever more peculiar.
1st September. Woke up as usual now to twitching legs and the electric current sensation in my back. Odd twitches elsewhere – back, other day hands, shoulder. This morning neck. Also shivering/fine trembling sensation slightly to the right of my windpipe and in sides of face, abdomen. Legs trembly and wobbly this morning too. Hands slightly trembling on keyboard now as a write. Back intermittently twitching – blup, blup, like bubbles on a thick boiling sauce. Unpleasant scratchy/sore sensation in centre of my chest as if I’ve been smoking. My voice is hoarse too. Walking seems to keep it at bay. The other sensations come and go – like someone turning on an electric current – but this morning have been constant. The fasciculations are worse when I sit or lie down but difficult to link to anything else I might do.
I can’t help worrying about something serious, although I am trying not to ‘catastrophise’ and to remind myself that it's unlikely. I notice my legs ache when I go upstairs and my arms when I raise them above my head for warm up for abs DVD. Also breathlessness on going upstairs. I have decided to allow myself a ‘worry slot’ every morning and not think about it for rest of day. This has been freeing. Yesterday on top of bus going to L’s from the Downs I was able to observe the world passing, enjoy the warmth and sunshine. Anxiety is like a tent rope anchoring the mind and preventing it from moving freely. When you’re experiencing it you are tethered. You can’t think of anything else. You can’t imagine what you normally think about. Your concentration is focused on just this one huge thing like and enormous eclipse of the sun blocking out the rest of the sky.
It seems there is something called Benign Fasciculation Syndrome. I read on a forum about this someone saying that alcohol seemed to reduce symptoms, which is what I have also experienced. someone else said it’s because it depresses the central nervous system. I’ve also decided to cut out caffeine – had been having one cup of coffee a day – it’s so good for sharpening the brain but maybe I can’t tolerate it. Needless to say had caffeine withdrawal headache yesterday but now it’s gone.
2nd September. Fasciculations slightly less pronounced this morning? Have been wearing ordinary shoes rather than the Skechers – does this have any effect i.e. Skechers putting more strain on my muscles, which then fasciculate more? Slight numbness down right side of face and right arm. Bit like when local anaesthetic wearing off after dentist. Took the omeprazole yesterday –no effect on the right sided tightening/pain/discomfort/hoarseness, as expected. Shd I carry on taking? Woke with headache which passed after drank water. L thinks omeprazole slightly dehydrating. She agrees that doesn’t sound like GERD.
13th September. Fasciculations continue as before – most noticeable in legs, back, feet, hands, occasionally face. The usual right sided pain coming and going – when I was walking to and from P. I stopped taking the omeprazole as it didn’t appear to be working and last thing I feel I need if I have anything to do with nerves is a medication that depletes vitamin B 12, one of its side effects. Horrible intermittent sensations in chest and throat (either side of windpipe) that can last for up to or over an hour. Difficult to describe – internal quivering/discomfort almost pain. Also under ribs on both sides. Slight headache. Strange sensations in jaw – down sides of face below the ears both sides. This afternoon – pain in back of arms. Continuing ‘electrical’, vibrating sensations in neck and arms. They have cancelled appointment with neurologist on November 15th. I don’t know how long I can stand this. It seems to be getting more widespread – don’t know if actually ‘worse’. I’m frightened. Have been reading about Benign Fasciculation Syndrome but doesn’t seem to entirely conform to that. Also wondering if anything to do with antibiotics as I had three severe bouts of cystitis (in fact was taking fluoxetine (?) just before I had the first bout of symptoms which were misdiagnosed as heart attack). Seems some antibiotics can cause peripheral neuropathy with motor involvement in people who are susceptible.
14th September. Took two paracetamol last night as had cystitis. Slept much better and symptoms seemed slightly less when woke up. Dizziness on getting out of bed which persists (9.42 a.m.). 11.00 Aching jaw when chewing food. 11.34 a.m. About half an hour after eating a snack. Internal quivering in neck in soft tissue above and either side of the windpipe. Ditto abdomen under ribcage.
Other symptoms: dry irritating cough – sometimes at night. Breathlessness on going upstairs – and yet I can run for a bus with no problem. Tightness in chest. Central chest pain/soreness. Morning headache.
17.00 Have actually had a relatively o.k. day today with low levels of symptoms – apart from central chest pain/soreness/cough.
What makes symptoms worse: exciting (?stressful) things – can be pleasant like friends visiting, parties, talking to people, rushing about, physical activity, although when actually doing PA symptoms often improve.
20TH September. Fasciculations (as before) lying in bed last night trying to go to sleep and on waking.
Fasciculations in soft tissue of neck (intermittent).
Burning knees (as before)
Right-sided chest pain (as before), hoarseness (as before)
Strange sensation in side face, jaw, ear (hard to describe a bit like when you blow up a balloon).
23rd September. Bad afternoon and evening yesterday. The strange feeling in my chest on and off all afternoon. Hoarseness. Feeling really ill and debilitated. Fasciculations in bed. Cramping in bottom of feet. Beginning to dread going to bed as doesn’t feel relaxing and restful.
Slept well however and didn’t lie awake in night (probably as slept so badly previous night.
This morning on the whole feel better chest pain gone but new thing left leg: back of thigh feels ‘stiff’ with crampy pain like when you have done a lot of exercise.
Vibrating sensations in balls of feet.
Fasciculations down side of right neck as I sit writing this and in calves.
Strange feelings in ?salivary glands (like blowing up balloon).
New symptoms (since mid-July)
Fasciculations - visible to naked eye felt at rest: legs, back, arms, hands (palms and top), bottom of feet mainly; lips, tongue and face (occasionally recently).
Vibrations - finer 'vibrating' sensation - mainly back
Sort of cross between 'large' fasciculations & ‘vibrations’ – most troublesome in right neck area; under ribcage; abdomen in six pack area. Can feel these if put hands gently on them but can't see with naked eye
Cramps - feet, calves, back thighs, shoulder (where strap of handbag goes on left shoulder)
Twitches/jerks - like when you are about to fall asleep
Jelly-like legs (intermittent) - not like when you are nervous but a real physical sensation as if legs turning to jelly
Aching muscles legs when walk upstairs; aching muscles arms when raise them.
Aching down side of face/jaw
Couple of years
1. 'Pain' in chest - to right of sternum and slightly above breast inside - intermittent tightening pain/discomfort as if someone pulling on a wire or string - accompanied by hoarseness/itchy cough. Feel perfectly normal in between and hoarseness goes. Not sure if anything triggers this as can happen when I'm at rest so not directly exertion linked but think it might be linked to 'stress' even pleasant stress like laughing and having a good time with friends and sometimes physical exertion.
2. Fluttering in chest - I thought this was heart-related but have been thoroughly examined and now wondering if neurological. Normal angiogram – clear arteries.
48 h ECG - Told I have premature ventricular contractions (benign).
3. Intermittent breathlessness on exertion - this is strange because sometimes I can be breathless just climbing stairs but other times I can run for a bus and not even be panting by the time I reach it.
Had for years (since my 20s/30s)
"Numb" spot right flank - it's not completely numb but partially - since my early 20s
Also when lie on right side whole of that side goes numb - legs, side of ribcage, arms, side of face, ears - and then get pins and needles when roll off my right side. I developed this in my 20s. A bit later same thing started to happen on my left side too. Since my 20's-30s.
"Numb" spot back (this is more recent)
"Burning knees" – when I get up from sitting on a hard chair for any period of time. Associated with numbness - had this for years but it seems to be worse at the moment
“Internal tremor" - had this for years and vaguely wondered if low blood sugar - it's hard to describe but sort of fine internal vibration – but now wonder if CNS related.
Other (may or may not be relevant)
"Ischaemic ECG" - this is the thing that got all cardiologists concerned when I had what they thought was a heart attack in January this year. After all tests – enzyme, echocardiogram, exercise ECG came back negative they concluded it was 'normal for me'.
Angiogram was completely clear but cardiologist showed me 'curly' blood vessels around heart, which he said shows heart muscle has enlarged slightly. He wasn't especially worried about this put this down to possible hypertension.
Palipitations – were quite severe after heart attack episode but are now more intermittent and eventually these were attributed to benign PVCs (premature ventricular contractions) after the 48h ECG.
Increased saliva - I noticed I am getting more and more plaque and hygeinist commented that it wasn't my fault it was because I was producing a lot of saliva and she could see this when she was descaling.
Low white blood cell count - from three blood tests done between March and now (don’t know exact count). Also was slightly hypothyroid but that's returned to normal apparently
Sweats - day & night - always thought these were hot flushes but I've been having them for years and they are preceded by 'sore/tender' skin sensation i.e. I know when I'm going to get one because my nerves seem to go on edge.
New today: widespread aching. Aching down right side of face as if I’ve been chewing for hours, tops of both arms, back of thighs, side of right leg. Nerves feel ‘sensitive’/’on edge’. Fine tremor hands – affects writing and eating (i.e. shaking hand when lift spoon to my mouth). Aching neck and fine tremor (not visible). Feeling of muscle strain as if been carrying a heavy rucksack on my back (I haven’t!)
The strange swooping/swooning/ ‘going down in a lift’ sensation in right chest followed by feeling as if going to faint and awareness of heart beat.
Aching ankles, aching jaw, aching wrists, aching shoulders. Cramping walking upstairs. Tiredness. “Brain fog”
Speech is affected – not all the time but at times finding it hard to say consonants. Also writing and typing affected by tremor. Nerves feel constantly on edge. Legs v wobbly – feel like jelly when walking. Did exercise DVD this morning and felt they were going to give way, although I could actually do it and felt better afterwards. My face is twitching – lips especially - again not all time. The other morning I bit the inside of my lip with a facial jerk/twitch. I’m scared. Finding it hard to work/concentrate.
Tuesday, October 12, 2010
Neck feels wobbly/shaky/trembly. Hands trembly on keyboard when first got up but seem to have stabilised somewhat. Face feels ‘sensitive’/on edge under cheekbones.
Tuesday, October 19, 2010
Feeling really rough today after bad night. “Flu-ey” and tired. Malaise. Slight headache. Tender chest. Difficulty concentrating. Pulse/heartbeat rapid. Had couple of ‘funny turns’ last Thursday and at w/e – ‘palpitations’/irregular heartbeat accompanied by feeling as if I going to faint. Sweating. Feeling of general unwellness. How long can all this go on?
Thursday, October 21, 2010
Felt better yesterday, although aching shoulders. Bad today. Could hardly get up so tired. Foggy brained. Horrible quivering sensations inside. Fasciculations above and below right shoulder blade. Felt less tired as morning went on. Slight tremor/internal quivering hands. Strange sensations in neck, fasiculations right neck.
Afternoon: Quivering in throat and around my back just above waist. Pressure on cheekbones. Generally twitchy feeling in my face, back and arms as if they not under my control and are going to start twitching uncontrollably.
Tuesday, October 26, 2010
Feeling really ill today, although fasciculations seemed less pronounced this morning. Sensations in head and face including eyes. Neuralgic discomfort/pain in back left head, left nose and left eye. Ditto down side right face and down right shoulder, back of arm, back of right ear. Burning knees and front of thighs. Sciatic feeling down left leg. Aching arms and back. Pressure induced – worse lying in bed, when first get up or when sitting at desk. Not been for walk today yet.