Scared, worried, frantic, desperate to talk to someone! xxx
Posted: Thu Dec 08, 2011 10:23 am
Hi all
First of all I'd like to say hello!! Secondly I'd like to say I'm so sorry but this is a long winded one!!
Yesterday I decided to write down all the symptoms I have been experiencing for several years! and most have been getting much worse recently! Iam so at the end of my tether! I just want to find out what is wrong. I've been putting it down to spinal injuries I received 15 years ago but the Orthopaedic spine surgeon says it's NOT coming from my spine!! He is referring me to a Neurologist urgently as I have some problems with my reflexes!
I've been ill for so long on & off but MS never entered my head until now!!
That's why I'm scared!!
The following is the list!!! It's shocked me how long it is!! Anyone been through this? similar symptoms etc etc ? The worst ones for me arethe pain - particularly around the chest & the overwhelming tiredness no amount of sleep alleviates!
I'm dreading going to the neurologist in case he just dismisses me! 8(
Slight blurred vision constant– much worse when tired,
Double vision most noticeable with text on TV – butone on top of the other instead of side by side!! – squinting helps
Severe Double vision episodes – last a few hours again one on top of the other –not side by side
Constant Flashing light to the left side – sometimes to the lower of both eyes
Sometimes aching pain on movement my eyes side to side
Constant Embarrassing twitch in left eye lasts for weeks – people comment on it as it sometimes spasms right down!!
Lights make me feel very sick & dizzy eg can’t stay in a dance for long, sunlight flickering in trees when driving
Odd happenings – had to pull into a layby because my eyes ‘went’ couldn’t see at all and felt like the muscles were pulling inward and upwards – lasted an hour - hubby had to come & get me
Left work – struggling with the hill because my legs were bad – went suddenly blind both eyes - like white snow and numbness and tingling down my side – ambulance called – lay in A&E for several hours until it subsided
History – I had an accident with a toggle hitting my eyeball & had months of treatment as high pressure behind the eye & swelling/inflammation to optic nerve
Central vision is not there when I look at things in the distance eg looking at a star I have to look to the side of it as I can’t see it when it’s straight on
Acephalic Migraines]– eyesight suddenly goes – starts with a large blind spot – then a shimmering spot seems slightly to the right then quickly fills and goes into a large arc with jagged prism like shapes – last 30 minutes – numbness down right face mouth and side – no real headache – sickly feeling – washed out for days
Recently having several bouts of dull headache – not severe at all but constant & is accompanied by nausea/sickly – disorientated – sweating & chills
Sometimes headache will start then build up throughout the day – painkillers don’t help
Very stiff for weeks at a time – most noticeable when try to look behind when reversing the car
Difficulty swallowing especially pills – regular choking sensation
Pills stick in throat & dissolve there
Severe gagging when cleaning teeth!!
C5 damage 15 years ago
Electric shock feeling shoots down my body when I look down - not all he time
Pins & Needles in feet & fingers
Electric shock feeling/pain shooting up & down my body if something/someone taps or knocks my foot!
Driving – my legs and feet go numb
Pins and needles – hard to push on the peddle
Always feeling exhausted
Need to go to bed most days
Work is difficult
Legs, arms and hands ache and feel weak
Muscle weakness – legs and back get very stiff - no strength – going upstairs a struggle
Feels like when you have the flu
When bad can’t think straight
Stress or upset totally floors me so Ihave to go to bed
If I do too much one day I spend days recovering/suffering
Can’t concentrate/read
Mind goes blank – talking to friends - especially under stress
Can’t get words out – talking with a mouthful of cotton wool
silly things like can’t tell left from right –typing has become difficult
names/dates/numbers – huge problems recently
Forgetting what I was going to say mid sentence!
Totally detached felling – I have to go home
‘all in my head’ feeling
Typing has gone really bad!
Very Clumsy & heavy handed
Slight dizziness now & then
Hot sweats constantly! I can;'t feel the cold at all!
Can't stand the Heating on in the house or the car or a hot day
Feel like my temp control doesn’t work – can’t feel the cold – not even in minus temps
Bowel – when my back & legs are stiff I sometimes get the feeling that nothing is moving or it’s all slowed down – like my bowel is asleep
Now & again – I have a single isolated bout of sporadic watery diarrhoea – no pain – no warning - I rarely make it to the loo – often followed by a normal stool
Lack of control episodes - Not feeling bladder full then suddenly feeling it – then can’t make it to the loo
My bladder empties when I get the electric shock pain around my abdomen
No physical sexual feelings – numb feeling
Freezing cold yet horrible burning feeling in the big muscles of my thighs – both sides but much worse more often on the left
Pain – episodes of Chest pain wrapped right around my lower chest (bra line) – severe spasms – last a few minutes – then spasm again – much worse at night – often wakes me up - can last a few days to a few weeks.
First time it happened it was so severe I ended up in A&E as I thought it was a heart attack
Pain in stomach – again spasming as above – as though the pain has moved a few centimetres down
Spasms round the stomach can feel almost colicky in the stomach itself – like it’s triggering the stomach to spasm
Pain in hip/groin – stiffness – hurts for several minutes to a few hours – can’t walk – both hips
Legs stiff – heavy feeling
Twitching in muscles – lasts between 10 – 30 mins
Often in my calf or front of calf – notice it worse at night
Think I’ve lifted my leg up – fall upstairs regularly and trip on rubber floors
Shaking – legs hands head – whole body sometimes - much worse in stressful situations – even mildly stressful situations!!
Overwhelming shaking – can’t speak – head shakes – hands shake – legs – whole body
No shaking when at rest – only when I go to do something – not all the time
Itching/prickling especially on legs and at night – feels like fleas biting me!
I become intolerant to everything!
Anti Depressants – I get an urticaria rash after a few weeks
Codeine etc – instant headache & violent vomiting
Even ibuprofen and Diazepam!
I ended up in hospital on a drip through taking Prozac
Tests I’ve had:
Blood tests – many tests over last 2 years constantly showing high WBC(the inflammation ones) – sometimes very high – sometime moderately high – never normal - nothing else shown up - under haematology consultant - being sent to a gland/endocrine doctor
Rheumatoid Arthritis - Clear
Anaemia – Clear
Thyroid – normal
Endoscopy – normal
Ultrasound – normal – gall bladder polyp – not thought to be enough to cause symptoms
Blood Pressure – sometimes normal – more often though it’s very low
Family History
Mother – Glaucoma – I have yearly/2 yearly tests – pressure high sometimes
Father – Addison’s Disease – died from stroke/large pituitary tumour (No tests for this apart from 1 GP blood test 7 years ago – normal)
Medical History Stuff
Breast surgery twice after lump– Major Ductectomy – 3 years ago
Cyst removed from Sinus twice – 10 years ago and 2011
Laparoscopy for irregular & heavy periods/pain – diagnosed severe adhesions – Mirena Coil for last 6 years – removed July 2011 – only 1 period since
Car accident 1994? - Discs in L4/L5 prolapsed, T7/8(?) prolapsed, Subluxation to C5 – no surgery needed, suffered with chronic back pain ever since – mostly muscular – managed with painkillers
Enlarged Lymph Gland removed from neck – clear – 11 years ago
Cervical Abnormalities – colposcopy & laser treatment – 15 years ago
A & E visits
Severe Palpitations – tests fine
Chest Pains – ECG fine - from Thoracic discs?
Eye injury with toggle – caused blindness – 12 months regular visits as pressure up and optic nerve inflamed
MRI Scan
I recently had an MRI scan. This was followed by a phonecall asking me to return as I had moved and the lower back images were no good. She also told me that the doctor wanted me to have a dye so he could look better at my thoracic spine.
When I went for the MRI it was in a portacabin because they were getting a new one installed. This nurse told me that the reason I was having another one was because the machine was broken the last time – nothing to do with me moving. When I mentioned I was expecting the dye she said there was nothing in the notes about that. I was told later by a friend who works there that the doctor who initially wanted the dye had left and that the machine in the portacabin was not working properly at all. She suggested I ask nicely for a repeat one.
First of all I'd like to say hello!! Secondly I'd like to say I'm so sorry but this is a long winded one!!
Yesterday I decided to write down all the symptoms I have been experiencing for several years! and most have been getting much worse recently! Iam so at the end of my tether! I just want to find out what is wrong. I've been putting it down to spinal injuries I received 15 years ago but the Orthopaedic spine surgeon says it's NOT coming from my spine!! He is referring me to a Neurologist urgently as I have some problems with my reflexes!
I've been ill for so long on & off but MS never entered my head until now!!
That's why I'm scared!!
The following is the list!!! It's shocked me how long it is!! Anyone been through this? similar symptoms etc etc ? The worst ones for me arethe pain - particularly around the chest & the overwhelming tiredness no amount of sleep alleviates!
I'm dreading going to the neurologist in case he just dismisses me! 8(
Slight blurred vision constant– much worse when tired,
Double vision most noticeable with text on TV – butone on top of the other instead of side by side!! – squinting helps
Severe Double vision episodes – last a few hours again one on top of the other –not side by side
Constant Flashing light to the left side – sometimes to the lower of both eyes
Sometimes aching pain on movement my eyes side to side
Constant Embarrassing twitch in left eye lasts for weeks – people comment on it as it sometimes spasms right down!!
Lights make me feel very sick & dizzy eg can’t stay in a dance for long, sunlight flickering in trees when driving
Odd happenings – had to pull into a layby because my eyes ‘went’ couldn’t see at all and felt like the muscles were pulling inward and upwards – lasted an hour - hubby had to come & get me
Left work – struggling with the hill because my legs were bad – went suddenly blind both eyes - like white snow and numbness and tingling down my side – ambulance called – lay in A&E for several hours until it subsided
History – I had an accident with a toggle hitting my eyeball & had months of treatment as high pressure behind the eye & swelling/inflammation to optic nerve
Central vision is not there when I look at things in the distance eg looking at a star I have to look to the side of it as I can’t see it when it’s straight on
Acephalic Migraines]– eyesight suddenly goes – starts with a large blind spot – then a shimmering spot seems slightly to the right then quickly fills and goes into a large arc with jagged prism like shapes – last 30 minutes – numbness down right face mouth and side – no real headache – sickly feeling – washed out for days
Recently having several bouts of dull headache – not severe at all but constant & is accompanied by nausea/sickly – disorientated – sweating & chills
Sometimes headache will start then build up throughout the day – painkillers don’t help
Very stiff for weeks at a time – most noticeable when try to look behind when reversing the car
Difficulty swallowing especially pills – regular choking sensation
Pills stick in throat & dissolve there
Severe gagging when cleaning teeth!!
C5 damage 15 years ago
Electric shock feeling shoots down my body when I look down - not all he time
Pins & Needles in feet & fingers
Electric shock feeling/pain shooting up & down my body if something/someone taps or knocks my foot!
Driving – my legs and feet go numb
Pins and needles – hard to push on the peddle
Always feeling exhausted
Need to go to bed most days
Work is difficult
Legs, arms and hands ache and feel weak
Muscle weakness – legs and back get very stiff - no strength – going upstairs a struggle
Feels like when you have the flu
When bad can’t think straight
Stress or upset totally floors me so Ihave to go to bed
If I do too much one day I spend days recovering/suffering
Can’t concentrate/read
Mind goes blank – talking to friends - especially under stress
Can’t get words out – talking with a mouthful of cotton wool
silly things like can’t tell left from right –typing has become difficult
names/dates/numbers – huge problems recently
Forgetting what I was going to say mid sentence!
Totally detached felling – I have to go home
‘all in my head’ feeling
Typing has gone really bad!
Very Clumsy & heavy handed
Slight dizziness now & then
Hot sweats constantly! I can;'t feel the cold at all!
Can't stand the Heating on in the house or the car or a hot day
Feel like my temp control doesn’t work – can’t feel the cold – not even in minus temps
Bowel – when my back & legs are stiff I sometimes get the feeling that nothing is moving or it’s all slowed down – like my bowel is asleep
Now & again – I have a single isolated bout of sporadic watery diarrhoea – no pain – no warning - I rarely make it to the loo – often followed by a normal stool
Lack of control episodes - Not feeling bladder full then suddenly feeling it – then can’t make it to the loo
My bladder empties when I get the electric shock pain around my abdomen
No physical sexual feelings – numb feeling
Freezing cold yet horrible burning feeling in the big muscles of my thighs – both sides but much worse more often on the left
Pain – episodes of Chest pain wrapped right around my lower chest (bra line) – severe spasms – last a few minutes – then spasm again – much worse at night – often wakes me up - can last a few days to a few weeks.
First time it happened it was so severe I ended up in A&E as I thought it was a heart attack
Pain in stomach – again spasming as above – as though the pain has moved a few centimetres down
Spasms round the stomach can feel almost colicky in the stomach itself – like it’s triggering the stomach to spasm
Pain in hip/groin – stiffness – hurts for several minutes to a few hours – can’t walk – both hips
Legs stiff – heavy feeling
Twitching in muscles – lasts between 10 – 30 mins
Often in my calf or front of calf – notice it worse at night
Think I’ve lifted my leg up – fall upstairs regularly and trip on rubber floors
Shaking – legs hands head – whole body sometimes - much worse in stressful situations – even mildly stressful situations!!
Overwhelming shaking – can’t speak – head shakes – hands shake – legs – whole body
No shaking when at rest – only when I go to do something – not all the time
Itching/prickling especially on legs and at night – feels like fleas biting me!
I become intolerant to everything!
Anti Depressants – I get an urticaria rash after a few weeks
Codeine etc – instant headache & violent vomiting
Even ibuprofen and Diazepam!
I ended up in hospital on a drip through taking Prozac
Tests I’ve had:
Blood tests – many tests over last 2 years constantly showing high WBC(the inflammation ones) – sometimes very high – sometime moderately high – never normal - nothing else shown up - under haematology consultant - being sent to a gland/endocrine doctor
Rheumatoid Arthritis - Clear
Anaemia – Clear
Thyroid – normal
Endoscopy – normal
Ultrasound – normal – gall bladder polyp – not thought to be enough to cause symptoms
Blood Pressure – sometimes normal – more often though it’s very low
Family History
Mother – Glaucoma – I have yearly/2 yearly tests – pressure high sometimes
Father – Addison’s Disease – died from stroke/large pituitary tumour (No tests for this apart from 1 GP blood test 7 years ago – normal)
Medical History Stuff
Breast surgery twice after lump– Major Ductectomy – 3 years ago
Cyst removed from Sinus twice – 10 years ago and 2011
Laparoscopy for irregular & heavy periods/pain – diagnosed severe adhesions – Mirena Coil for last 6 years – removed July 2011 – only 1 period since
Car accident 1994? - Discs in L4/L5 prolapsed, T7/8(?) prolapsed, Subluxation to C5 – no surgery needed, suffered with chronic back pain ever since – mostly muscular – managed with painkillers
Enlarged Lymph Gland removed from neck – clear – 11 years ago
Cervical Abnormalities – colposcopy & laser treatment – 15 years ago
A & E visits
Severe Palpitations – tests fine
Chest Pains – ECG fine - from Thoracic discs?
Eye injury with toggle – caused blindness – 12 months regular visits as pressure up and optic nerve inflamed
MRI Scan
I recently had an MRI scan. This was followed by a phonecall asking me to return as I had moved and the lower back images were no good. She also told me that the doctor wanted me to have a dye so he could look better at my thoracic spine.
When I went for the MRI it was in a portacabin because they were getting a new one installed. This nurse told me that the reason I was having another one was because the machine was broken the last time – nothing to do with me moving. When I mentioned I was expecting the dye she said there was nothing in the notes about that. I was told later by a friend who works there that the doctor who initially wanted the dye had left and that the machine in the portacabin was not working properly at all. She suggested I ask nicely for a repeat one.
