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zaff4444

Active member
Joined
May 12, 2008
Messages
43
Diagnosis
5/2006
Country
uk
State
z
City
newcastle
Hi,im new here.3 years ago i was diagnosed with proggresive spastic paraparesis,well this year begining of feb i have progressed rapidly tht whn i go to stand my knees touch each other,also look pretty slim,had appointment with neuro in march,wrote down symptoms tht appeared this year like-headaches,arms n hands feel weak,bowwel/blader incontinence,he told me tht he will contactc another neuro whose a proffesor and has more knowledge inn mnd,basically second opinion,so last week i got letter for appointment to see this neuro at end of july.anyway since end of march iv realised my skin on hands look blotchy like specks of red n yellow,my headaches cme on n off, n whn im angry my arms n hands shake like tremor,and the last 2 weeks whn i wake up in morning my fingers feel kinda tickly numb and cant clench my hands to make a fist till an hour after im up,but even thn they feel kinda weak n tickly.also whn i go sleep i cnt turn i have to sleep on my bck,and during day even now as im writng this i get twitches all over my body,these twitches have got frequent in last 2 weeks.plz can somebody reply.i need help.
 

zaff4444

Active member
Joined
May 12, 2008
Messages
43
Diagnosis
5/2006
Country
uk
State
z
City
newcastle
Hi,im new here.3 years ago i was diagnosed with proggresive spastic paraparesis,well this year begining of feb i have progressed rapidly tht whn i go to stand my knees touch each other,also look pretty slim,had appointment with neuro in march,wrote down symptoms tht appeared this year like-headaches,arms n hands feel weak,bowwel/blader incontinence,he told me tht he will contactc another neuro whose a proffesor and has more knowledge inn mnd,basically second opinion,so last week i got letter for appointment to see this neuro at end of july.anyway since end of march iv realised my skin on hands look blotchy like specks of red n yellow,my headaches cme on n off, n whn im angry my arms n hands shake like tremor,and the last 2 weeks whn i wake up in morning my fingers feel kinda tickly numb and cant clench my hands to make a fist till an hour after im up,but even thn they feel kinda weak n tickly.also whn i go sleep i cnt turn i have to sleep on my bck,and during day even now as im writng this i get twitches all over my body,these twitches have got frequent in last 2 weeks.plz can somebody reply.i need help.

Also get spasms whn i try to take few steps with help,and cramps whn im asleep.my arms feel heavy at night if im laid down(like thyr being hold down).these past 3 months iv had suicidal thoughts.my head aches have stopppd this last week,but whn i type my fingers kinda shake,i have pain in my lower bck whn i wake.my family think im mking things up,theyre in denial.iv also lost alot of weight,basically my whole body twitches,and since my arms feel weaker my shoulder and wrists also twitch,im also getting very clumsy whn going to grab something.plz reply,i fear i have pls/als,i wud like to hear if anybody else get these symptoms b4 thy were diagnosed.
 

kevinw

Distinguished member
Joined
Apr 15, 2008
Messages
203
Reason
DX UMND/PLS
Diagnosis
01/2008
Country
US
State
PA
City
Poconos
zaff4444.....First, please get those suicial thoughts out of your mind, if you feel your family is not taking you serious then maybe you should speak to a professional outside of you family that you can express all your fears. There is no shame is asking for professional help with these thoughts even before a diagnosed is made, just the thought of what it might be is enough to scare even the strongest.

Second, as far as your symptoms I am by no means a professional or doctor so I can't really comment on the path you might be on. One thing I can say is try not over analize your symptoms. You can keep track of them so you can give your neuro good information that he can sort thru, but try not to work yourself up so much that you create other "indirect" symptoms.

I guess what I'm trying to say is you & everybody has every right to be scaried when they are trying to search for answers.......but please I am no professional and your statement of "suicial thoughts" really scares me, so try to talk to someone (or just vent to us on hear, we'll listen).

Take care, hang in there, & good luck.....:)
 

zaff4444

Active member
Joined
May 12, 2008
Messages
43
Diagnosis
5/2006
Country
uk
State
z
City
newcastle
Thanx kevin for ur reply,whn u say seek proffesional help,where and who.i just want to kow if my symptoms relate to others tht got diagnosed with the terrible disease.once again thnx for ur reply much appreciated.
 

kevinw

Distinguished member
Joined
Apr 15, 2008
Messages
203
Reason
DX UMND/PLS
Diagnosis
01/2008
Country
US
State
PA
City
Poconos
In regards to the professional help, I meant that with the thoughts you have been having about sucide, (not sure how you would find a therapist in the uk).

In regards to your symptoms, you seem to have so many that it really is hard to tell without more information like what started first, when did it start, was it only one area then progress into other area's......it's just too hard to tell.

Don't misunderstand me, I am by "no means" a doctor I just wanted to help put your mind at ease. I do believe the symptoms you listed could have to do with a MND....but it could also be soooooo many other things. I would just try to keep detailed information for your appointment in July and try not to over evaluate your symptom. Just give your doctor the most real information you can that you think is truely a symptom that seems uncontrollable. I would think a good doctor would be able to sort thru symptoms that might be being created from fear and symptoms that are true from the exam.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
hi zaffa4444

as you can see i am in the uk. i have had pls for 9yrs now.
firstly i can not comment on the headaches, bowel, and hand problems with regards to mnd. they are not related to the desease nor is a skin rash. sometimes you can have other stuff going on that is unrelated.
you said you had a diagnosed 3yrs ago of sp, was that sporadic or hsp as in hereditory?
in sp/hsp it is the legs that are mainly effected with little envolvement elsewhere.
do you have problems in your upper body? how are your reflexes in upper and lower body? from your description it is hard to tell.
sp/hsp can be misdiognosed in the early stages of pls, they have to sometimes wait for upper body areas to be involved. i take it that you have had a emg and don't have any lmn symptoms indicating als,that is good.
you do get muscle twitching in pls but it does not cause the devestating effects seen in als.
it is very hard for people to understand what we are going through and the neuro's are not always forthcoming with info. that is what this forum is here for,to ask questions,get info and most importantly support.
we will try to help and support you anyway we can, but don't panic and wait for your next appointment and as kevin said don't muddy the waters with little things and give them the main problems. i suspect the other issues you have may be due to stress.
we are here for you
take care
caroline:-D
 

MICHELLE40f

Active member
Joined
Dec 23, 2007
Messages
39
Country
US
State
GEORGIA
City
ST.MARYS
Hi Zaffa

You sound A lot like me,I have alot of the same symptoms you describe,weak arms .legs,etc.. my neuro diagnosed me with spastic paraplegia (HSP) although I dont think I have any family history of it,I know it can also be sporadic . I have often wondered if mine were pls also. I have spasms,spasticity,pos.rhombergs sign,babinski sign,although the babinski isnt always here? clonus etc....but i also have carpal tunnel syndrome,i get confused because most sites say that arm symptoms are very minimal in hsp,but when i mentioned arm symptoms ,some swallowing difficutlies etc,my neuro just tells me its all part of my disease"hsp" i beleive we can also all have variables of the same diseases,,,,,,,i may have a slower form of pls,you could have a faster form of hsp and vice versa,sorry didnt mean to ramble,hope i helped some,lol {hugs}}}}}}Michelle
 

zaff4444

Active member
Joined
May 12, 2008
Messages
43
Diagnosis
5/2006
Country
uk
State
z
City
newcastle
Thanx olly n michelle.i think with stress my symptoms worsen.thnx for ur replies.x.
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
zaff4444,

You hit the nail on the head, stress will make your symtoms 10x's worst. Are you takeing anything for aniexty?
 

zaff4444

Active member
Joined
May 12, 2008
Messages
43
Diagnosis
5/2006
Country
uk
State
z
City
newcastle
No cryst,my doc last month prescribed me with anti-deppresants.but now way im going bk on thm,i was on anti-deppresants b4 whn i was 26 now im 33.i was diagnosed whn i was 30 stopped tkin a-d last year,reason thy mde me tired, sweat a lot n anxious,also constapation,so now my legs are so weak tht sumtimes its hard to even hold my bowels to reach the toilet,so a-d wnt help by causing constapation.also i might b wrong but i bleive 90% tht anti-deppressants cause mnd,i truely bleive tht.
 

zaff4444

Active member
Joined
May 12, 2008
Messages
43
Diagnosis
5/2006
Country
uk
State
z
City
newcastle
m sure 99.9% i have or in process of having als,my hands r gtting weaker,tht if i try n pick a pillow il drop it after 2secs,hands whn i pick pillow up feel tickly,cnt turn in bed no more,bite tongue accidently whn im eating,swallowing muscles gtin weaker,arms feel heavier n wobbly,cnt use knife and fork coz need left hand to hold table whn i eat or else id mke a mess,in the last week iv been gtin a weird feelin tht i have saliva build on left side cheek n feeling of left lower lip is wet,but whn i chck theres no wattery or saliva there.got married last nov,only problem at tht time was walking with help n balance,now it seems my upper body is affected,afraid i have als,wife will join me in uk whn i put spouse visa application soon,but now affraid tht im nnot how i was whn we got married,im rreally scared,and with me being ill im affraid her visa cud be refused,so once this happens n if i find out i have als,i will definitely end it,maybe even b4 tht,if symptoms get worser,for the lastt 4 months i have been sat upstairs in my room avoiding n gtin isolated from family,thy all think il get over it n socialise with thm,whn the truth is iv been shockd with wots happening to me,and now if i tell thm wot ive wrote here bout my symptoms i dont think thy bleive me 100%,my uncle 15yrs ago startd off in a wheelchair n thn for sum reason was paralysd neck dwn,tht he cdnt even speak apart from mumble,he died 15yrs ago,i remember i was 11yr old n id b sat in his house with his son,and my uncle cud speak,thn whn i was 16yrs old he cdnt move n wud groan n mumble,i was only person to visit there house,as my n my uncle family wrnt speaking to each other over sum family dispute,so now i dnt think my family understand how difficult it ccud get 4 me,i do coz iv seen my uncle suffer 1st hand,i dnt kno if it was als he had,coz 15yrs ago i dnt think thy had a name 4 it,anyway whn i got married last year i was so in luv with life n looking forward,now im very affraid,esspevcially wots happenin to me,sooner or later i will give up.:cry:
 

olly

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

you need to phone your neuro's secretary,if you don't know the number you can phone the neuro department and ask to be put through to them. tell them how bad you have been and if you can be seen sooner. or you can see your doc to phone up or go to a+e department. tell them all how bad you feel psycologically as well.
i can not understand how some familys are so uncaring, you need support and help from your family and you must stress this and how bad you feel.
immigration will not discriminate because you are ill and refuse your wife a visa.
you need to keep posotive thoughts of your wife in your head and keep telling yourself that with help you can cope with this. theres a good chance it's not als and even though you may never be well again like all of us here, you can have a good quality of life it just takes a little more work than able bodied people.
you need to get help tomorrow, please promise you will do this.we care and your wife and i am sure deep down your family does, you have to believe that.
take good care
caroline
 
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