not worth living

[zaff4444]

Im so sorry if i offend anybbody here.but i dont think i can cope to whats happenin to me anymore.i have an appointment to see a neuro end of july,i am currently undiagnosed,i feel as if im bedbound,3yr ago it startd with left knee buckling whn i walkd,thn got physical exam on me n sent to hospital 4month later.was there 2 weeks had p/t and mri and bloodtest come bk ok,my neuro cdnt diagnosed me but said i had spasticity in gait and unknown aetiology,and sent home with crutches,last year my balance went worse but had enough energy and strength to hold somebody arm and walk,or use 1 crutch,the last 4 months i have lost 2stones in 2months and every 2weeks i get new symptoms or weakneses starting from february,now when i hold onto something to stand i cn feel my limbs feel weird like heavy and tightening,also whn i try to turn in bed i cant so sleep on my back,my left hand knuckle feels kinda tight and looks as tho bone digging in also feels like that,i used to sleep for long hours and not wake but now if i stay up till 5am id be up at 10am or wake during sleep,sumtimes wake due to bad cramps in thighs n feet,whn i stretch my legs whn i wake,i get cramp in my feet and my toes curl inwards for few seconds,have footdrop,babinski,clonus.last week calld gp for home visit,coz i was having constapating problems and chest felt tight n lungs whn i breathd,he advised tht best to wait n see neuro end of july,and thought it be best if i had a whhelchair,i told him,well wrote all my symptoms down,i almost forgot to say tht since feb whn weakness n new symptoms began,my upper body is also gtting affectd,like examples-last year my left hand fingers wud feel numbish n ticklish whn i clench my hand,but starting feb my right hand is feeling like tht also,whn i wake up my fingers are kinda numb for atleast 5mins,like if i went to light a cigarete with a lighter id have no strength to,and my arms are kinda feel weird like rubber band,example,its getting difficult to shave or wash or eat,thy feel hyper reflex,if i sit too long on a chair i get lower bk pain also,and since feb whn i stand or try to sit id slump without balance,and whn i try to stand with help my legs kinda bounce or shake,so basically inside 3yrs iv gone like this,it all got worse this feb,i even whisper rather thn talk coz my voice has slurred alot and if i try to talk it sounds as tho im raising my voice,so i whisper,i get headaches on/0ff sharp pains in my brain it feels,the most worrying is the emotional liability part tht has made me think als,id laff and smile for no reason,and cry uncrontrolably if sumbody mentions sad things,i get emotional.i also want somebody advise if feeling impotent happens in als progression,basically i got nothing to lose now,iv lost my dignity and now im losing hope,i just wish i cud sleep n never wake up.im sorry if i upset anybody her.plz accept my appology,and if anybody cn tell me how to end it all,plz feel free to pm me,coz either way im close to ending it very very soon,so any solution just pm me,thnx,.

 

[Al]

Zaff you quit talking like that. Do you realise how much trouble it would be for me to remove you from my friend list? I don't want to have to do that. I think you need to call the GP and get him over there and tell him what you just wrote down here. He'll get you some help. By the way, just because you feel impotent ? doesn't mean YOU are.
AL.

 

[CindyM]

Zaff- believe it or not you are not the first person around here to be in such bad straights. In every case his or her medical symptoms were explained and each time it turned out to not be ALS!

I am not saying your problems are not real. I am saying that you should hang in there and get some answers. It is obviously something very hard to detect. Please keep trying. I am very hopeful that your condition is treatable, though maybe rare and obscure. Please keep searching for answers.

Cindy

 

[MR.N]

Me too

June 5th I was told that I have ALS. Waiting for appoint for the second opinion, I have made three calls and the Doctor one and still have not received a return call. I can see where you are getting disapointed as I have many the short time that I started seeing doctors, about 5 months, now on 8th Doctor.

I too at times wonder why go on. I saw my 1 and 3 year old grand sons on Saturday. This is why I keep my head on straight.

Look around, others are glad to have you near.

 

[Geo]

You Must give them Hope ,Little people need our hope and support to go on ,If they see us give up then they to will be quiters . My Country is not made up of Quiters . This Is why were at the point we are ,Our Medical Community has quit ,they have laid down on us ,I know 4 Nurses who were Cancer Nurses and all have Moved out of Nursing all together ,Because of Frustration of None of the Scientist are being given an order to go after it . Our medical System is Broken and greed is to Blame . Instead of Giving up ,Get Mad and try to change things so someone can have a chance someday . I wander how some would feel having someone in their family have a incurable disease knowing they could do something and not .Geo

 

[olly]

zaff4444

i am so sorry to hear your still not doing well,please call your neuro's secretary and tell them to let your neuro know how you are feeling or ask your doctor to do it. they may be able to get you an emergency appointment. or failing that go to a+e, if you are very bad they will admit you to the neuro ward.
you said when you first came you had a diagnosed of hsp. if you are having major upper body spasms and bulbar it sounds more like pls,ask your neuro about this though over here in the uk neuros dont know much about pls and have never seen anyone with it so they just label you with mnd.
weakness/muscle weakness is part of spastic paralysis/hsp/pls so dont worry about it being als. i had severe spasms/myoclonus in the earlier years but now muscle weakness is my most major problem on a day to day basis with bouts of spasms/clonus/myoclonus thrown in for good measure.
i am sure you will be ok with proper treatment and care,the first few years with pls seem to be the hardest for most people but then there symptoms level off with slow progression and it gets easier to cope so please dont give up yet.
we are always here for you and will be with you all the way.
take good care
caroline:-|

 

[ladyk]

Omg!

I have felt the same, that life may not be worth it anymore so your post reallly touched my heart. After I clicked on "post reply" i was just absolutely "speechless" for like 5 minutes. I'm undiagnosed and suffering but look at the faces of the people who love me whose eyes light up when they see my now decrepit self and so I stay until the universe/god/goddess/great one chooses to take me. I know it's so hard but try to find some happy shiny piece of existance that lets you know it is worth it to be here. Reach out to your docs and ask for help, your life is worth it!