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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.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Zaff, could you do us a favor and use periods and paragraphs? I find your post very hard to read and therefore didn't finish it. Sorry but it's too hard to read late at night.

AL.
 

zaff4444

Active member
Joined
May 12, 2008
Messages
43
Diagnosis
5/2006
Country
uk
State
z
City
newcastle
hi

forgot to mention tht the neuro also wants a genetic test done,i know no neuro in this world can cure whatever i have,but atleast this 1 seems very determined to get to bottom of this and find out what i have.also forgot to mention prev thread tht iv lost 3 stones in 4months and look and feel weak,hard to explain unless u knew me or seen me b4 this weight loss,i told neuro also bout my loss of weight,well wrote it down.
 

zaff4444

Active member
Joined
May 12, 2008
Messages
43
Diagnosis
5/2006
Country
uk
State
z
City
newcastle
Sorry al,i try my hardest to type but find it dificult i just stare at keyboard and type slowly,im sorry.:(
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I can only type with one crooked finger and use arm weight to push down key. I know it's hard but the space bar is easy to use. You might get more replies if it was easier to read. Windows XP has sticky keys that capitalize the next letter you type after the shift key. Might help you.

AL.
 
Last edited:

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
hi zaff

i am so glad to hear you are going to see someone more specialised and having more tests. it is a shame you have had to wait and suffer for more to be done but hopefully the new neuro will be able to help more.
i really think your bowels and skin problems is stress related and you may be run down.
you sound like you have ibs(irritable bowel syndrome). a good diet of fruit,veg and wholemeal bread,rice pasta etc can really help it.
to help your skin i would recommend organic nettle tea,you can get it from holland and barretts or health food shop.
it cleanses the system and is brilliant for acne,ezema and psoriosis.
drink it without milk but you can put suger or honey in if you don't like the taste.
i'm used to herbel teas so it tastes like normal tea to me.
you need to drink 2-4cups a day for a few weeks to tell a difference.
i do swear the natural remedys like these are so much better for you and if you follow them you will see a difference in your bowels and skin.
you can pm me anytime you need to talk,i will keep you in my thoughts.
take good care.
caroline:)
 

DBowman

Active member
Joined
Feb 14, 2007
Messages
74
Reason
DX UMND/PLS
Country
US
State
Virginia
City
Harrisonburg
Thank Goodness!

It is so good to hear from you and you had a LOT of stuff to report! I think about you often and wonder how you are managing. Do you get a lot of help from your family? What have they to say about your information? And what has happened with your new wife? Can't "they" speed things up to get her into the country considering your present medical condition? I would think they could...
 
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