pLEASE PLEASE Help I am desperate for advice with M.S
Posted: Thu Oct 18, 2012 4:58 am
HI Guys,
This is my first time on here and I am in desperated need to share my experiances and hope that others on here can share theirs with me, as I have genuinly had enough and need to discuss my current situation with others.
In brief, my symptoms:
Jan 2012 started suffering fronm cognitive impairment (learning new things become difficult and my short term memory affected)
April full blown attack:
Paralized episodes - conscious, although non responsive no movement
Sezuire type episodes - consicious, although non repsonsive and strong spasticity movemtments, myoclonic jerks,followed by tremors all over the body.
Chronic fatigue, almost bed ridden
Chronic right leg ataxia, bowed and buckled inward
Stroke like symptoms
intollerence to heat and sunlight
brethless all the time
jerks and electric shocks in face and my jaw keeps going rigid
Muscle cramps in lower legs
pin and needles in hands, feel and arms
Neuropathis pain in knees, ligaments, feet and rib cage
walking wobbly and off balance
waekenss and numbness
erractic bowel and bladder - sometimes constipated, overly urinating, and bouts of diahreah
Moods swings
Sweating
Referrals - 7 trips to A&E due to respitory concerns, sezuires (non epileptic) and stroke like symptoms
referred to Neurologist and was kept as in patient for a week for tests:
EEG clear, other than the video which revealed the sezuire episodes that are not epilepsy
EMG clear - spinal tap clear- bloods clear - CT Scan of brain clear
First MRI Scan without contrast revealed - HIGH SIGNAL INTENSITY FOCI IN VARIOUS REGIONS OF BRAIN - radiologist suggested demylinination - perfromed in May 2012
Sent home and was told it was psychogenic or stress and or ageing, please note I am 37 years old and normally healthy!!!!! couoldnt beleive what I was hearing!! demanded a second opinion from another Neurologist.
Referred in September - 2nd MRI performed with contrast revealed: high signal intensity only in the front lobes no leisons found this time.
From my understanding the 2nd MRI being 4 months after the ist has revealed less intesntiy and only one area (front lobes) and the previous lesions have diminshed. this must rules out the age theory as the mri would be the same, ageing spots/leisions would not just disappear???
Kidneys and thyroids, hormones etc all clear and normal.
Has anyone else experiance this??? I still say I have multiple sclerosis which I have maintained since day 1, even A&E thought this attack was M.S which lasted 3 months, as strokes have been apparent. I was not stressed when I first became ill, I now cannot drive or work or go out alone. No ones is telling me anything, my new neurologist has said nothing really, when I asked him directly about M.S he said: im not convinced as yet and I do not have the opitcal issue that M.S sufferers have, I have had only one very severe attack. At present I have picked up a little and am feeling better than before, I am still having sezuire episodes and am tired alot and still have myoclonic jerks but have improved 50%.
Can some please help!!!!!
thanks in advance
This is my first time on here and I am in desperated need to share my experiances and hope that others on here can share theirs with me, as I have genuinly had enough and need to discuss my current situation with others.
In brief, my symptoms:
Jan 2012 started suffering fronm cognitive impairment (learning new things become difficult and my short term memory affected)
April full blown attack:
Paralized episodes - conscious, although non responsive no movement
Sezuire type episodes - consicious, although non repsonsive and strong spasticity movemtments, myoclonic jerks,followed by tremors all over the body.
Chronic fatigue, almost bed ridden
Chronic right leg ataxia, bowed and buckled inward
Stroke like symptoms
intollerence to heat and sunlight
brethless all the time
jerks and electric shocks in face and my jaw keeps going rigid
Muscle cramps in lower legs
pin and needles in hands, feel and arms
Neuropathis pain in knees, ligaments, feet and rib cage
walking wobbly and off balance
waekenss and numbness
erractic bowel and bladder - sometimes constipated, overly urinating, and bouts of diahreah
Moods swings
Sweating
Referrals - 7 trips to A&E due to respitory concerns, sezuires (non epileptic) and stroke like symptoms
referred to Neurologist and was kept as in patient for a week for tests:
EEG clear, other than the video which revealed the sezuire episodes that are not epilepsy
EMG clear - spinal tap clear- bloods clear - CT Scan of brain clear
First MRI Scan without contrast revealed - HIGH SIGNAL INTENSITY FOCI IN VARIOUS REGIONS OF BRAIN - radiologist suggested demylinination - perfromed in May 2012
Sent home and was told it was psychogenic or stress and or ageing, please note I am 37 years old and normally healthy!!!!! couoldnt beleive what I was hearing!! demanded a second opinion from another Neurologist.
Referred in September - 2nd MRI performed with contrast revealed: high signal intensity only in the front lobes no leisons found this time.
From my understanding the 2nd MRI being 4 months after the ist has revealed less intesntiy and only one area (front lobes) and the previous lesions have diminshed. this must rules out the age theory as the mri would be the same, ageing spots/leisions would not just disappear???
Kidneys and thyroids, hormones etc all clear and normal.
Has anyone else experiance this??? I still say I have multiple sclerosis which I have maintained since day 1, even A&E thought this attack was M.S which lasted 3 months, as strokes have been apparent. I was not stressed when I first became ill, I now cannot drive or work or go out alone. No ones is telling me anything, my new neurologist has said nothing really, when I asked him directly about M.S he said: im not convinced as yet and I do not have the opitcal issue that M.S sufferers have, I have had only one very severe attack. At present I have picked up a little and am feeling better than before, I am still having sezuire episodes and am tired alot and still have myoclonic jerks but have improved 50%.
Can some please help!!!!!
thanks in advance