zaff4444
Active member
- Joined
- May 12, 2008
- Messages
- 43
- Diagnosis
- 5/2006
- Country
- uk
- State
- z
- City
- newcastle
Hi,i went to new neuro tht my current neuro refferd me to bcoz new neuro is prof and expert in his field,here is his website of the hospital,his name prof p.f.chinnery.
http://www.cnmd.ac.uk/researchgroups/patrickchinnery
anyway he agrees with me tht my condition has progressd rapidly,i wrote all new symptoms i been gtting since jan/feb 2008,so in 6 weeks he wants these tests done to me-blood test.numbing of skin and get bit muscle out for examining muscle atrophy,he mentiond a test where thy chck breathing and speech,emg.whn he done the reflex test he noticed no nerve in ankle,i also realised every other part he tapped jumped,apart from ankles.whn he was telling me tht 1 of test might be slightly painfull coz thy stick needles to chck nerves or summat,so i said is it an emg test,he looked intrestingly at me and replied you done your homework,i replied i done research on internet.he asked me ok so what do u suspect is going on with u,i replied als,he said he must admit tht all my symtoms relate to mnd symptoms,and told me tht als in uk is called motor neurone disease.i had to whisper to him and explained i go out of breath or slur if i speak.he seemed very determined to find out what is going on.he said its been long enuff for(3yrs)so we must get to bottom of this and find out what it is.note:3yrs ago my left knee buckled whn i walkd,hospital done blood,mri,lumbar puncture.all come bck negative,but neuro said i have a spastic paraparesis tht will gradually progress,so thy kept me in hospital for 2weeks,was gttin p/t while in there.thy let me go and gave me clutches.to help.so the year after tht buckling spread to right knee,and last year both legs were gtting weaker,so starting this year jan/feb these symtoms and state im in-my both feet during feb,felt like thy were curving in and feel sore,constapation,and still do spend hours sat on toilet to empty bowels,also sudden urges to empty bowels whn not expected,had numerous accidents.sumtimes get like a sore feeling in my anal when im sat and this makes me have bowel movements,but dont if im sat on toilet.cnt turn no more on sides in bed,ill sleep 5 hours and wont feel sleepy next day,where as last year if i slept for 5 hours id be tired/sleepy next day,arms feel heavy n jerky/clummsy movements,im sure if im angry i get seizures where all my body feels shaky and weak,skin on arms hand maybe feet and legs ,but noticeed on hands look blotchy with yellowy specks also achne/boils on cheeks forhead bhind ears,bizarre muscle twitches tht started on thighs ended up all over my body inconsistently,tht now i know its fasculations,coz whn i get thm on hand feet n fingers especially i feel a vibration feeling and can see my finger jerking uncontroloby.neuro noticed the skin n boils/achne.breathing difficulty,feels like i have to deep breath and speech progressivly gotten worse tht now i whisper to be understood or easier to be understood,muscle atrophy on top of knuckles where little finger is,urinary inconsistency/urgency,sumtime get like stingy feeling whn urinate,or have urge to but difficult to urinate,emotinal liability,lower bck pain if i sit longer thn 2hours whn on pc,where as last year id be on pc for 4/6 hours.anyway all these symtoms startd this year between january and february,the very 1st symtom i still remember very very well,i was sat with my nephew we were on the ps2,thn suddenly i was feeling sharp needle like pains in my head,i was gttin these pains for month and half,the rest symptoms followed gradually after this,i dont socialise no more,feel suicidal/angry.lost my apetite.lay in bed,feel bedridden.but scared to admit,but in my head i know.thnx all for reading,i was gna pm this to olly but she pmed me b4 i went to see neuro,and reminded me tht post in forum what happened/said when i went.im sorry if i sound/thinkd selfishly,i realised we all more or less likely learn from each other experience/symptoms.i sumtimes feel tht this my hell im living and when its over heavens door will be open for us all.i truly bleive that.
http://www.cnmd.ac.uk/researchgroups/patrickchinnery
anyway he agrees with me tht my condition has progressd rapidly,i wrote all new symptoms i been gtting since jan/feb 2008,so in 6 weeks he wants these tests done to me-blood test.numbing of skin and get bit muscle out for examining muscle atrophy,he mentiond a test where thy chck breathing and speech,emg.whn he done the reflex test he noticed no nerve in ankle,i also realised every other part he tapped jumped,apart from ankles.whn he was telling me tht 1 of test might be slightly painfull coz thy stick needles to chck nerves or summat,so i said is it an emg test,he looked intrestingly at me and replied you done your homework,i replied i done research on internet.he asked me ok so what do u suspect is going on with u,i replied als,he said he must admit tht all my symtoms relate to mnd symptoms,and told me tht als in uk is called motor neurone disease.i had to whisper to him and explained i go out of breath or slur if i speak.he seemed very determined to find out what is going on.he said its been long enuff for(3yrs)so we must get to bottom of this and find out what it is.note:3yrs ago my left knee buckled whn i walkd,hospital done blood,mri,lumbar puncture.all come bck negative,but neuro said i have a spastic paraparesis tht will gradually progress,so thy kept me in hospital for 2weeks,was gttin p/t while in there.thy let me go and gave me clutches.to help.so the year after tht buckling spread to right knee,and last year both legs were gtting weaker,so starting this year jan/feb these symtoms and state im in-my both feet during feb,felt like thy were curving in and feel sore,constapation,and still do spend hours sat on toilet to empty bowels,also sudden urges to empty bowels whn not expected,had numerous accidents.sumtimes get like a sore feeling in my anal when im sat and this makes me have bowel movements,but dont if im sat on toilet.cnt turn no more on sides in bed,ill sleep 5 hours and wont feel sleepy next day,where as last year if i slept for 5 hours id be tired/sleepy next day,arms feel heavy n jerky/clummsy movements,im sure if im angry i get seizures where all my body feels shaky and weak,skin on arms hand maybe feet and legs ,but noticeed on hands look blotchy with yellowy specks also achne/boils on cheeks forhead bhind ears,bizarre muscle twitches tht started on thighs ended up all over my body inconsistently,tht now i know its fasculations,coz whn i get thm on hand feet n fingers especially i feel a vibration feeling and can see my finger jerking uncontroloby.neuro noticed the skin n boils/achne.breathing difficulty,feels like i have to deep breath and speech progressivly gotten worse tht now i whisper to be understood or easier to be understood,muscle atrophy on top of knuckles where little finger is,urinary inconsistency/urgency,sumtime get like stingy feeling whn urinate,or have urge to but difficult to urinate,emotinal liability,lower bck pain if i sit longer thn 2hours whn on pc,where as last year id be on pc for 4/6 hours.anyway all these symtoms startd this year between january and february,the very 1st symtom i still remember very very well,i was sat with my nephew we were on the ps2,thn suddenly i was feeling sharp needle like pains in my head,i was gttin these pains for month and half,the rest symptoms followed gradually after this,i dont socialise no more,feel suicidal/angry.lost my apetite.lay in bed,feel bedridden.but scared to admit,but in my head i know.thnx all for reading,i was gna pm this to olly but she pmed me b4 i went to see neuro,and reminded me tht post in forum what happened/said when i went.im sorry if i sound/thinkd selfishly,i realised we all more or less likely learn from each other experience/symptoms.i sumtimes feel tht this my hell im living and when its over heavens door will be open for us all.i truly bleive that.
