How do you cope?

[chris_uk]

My title says it all really, everyone on here is sooooo much braver than i could ever be. I have had constant twitching in my calfs now for 4 days and i mean constant, every second for 4 days it twitches and i know deep down that this is not mormal.

I have been to the doctors once and i am going back either tonight or tomorrow to get referred to a neuro. I can not believe how this has ruined my life is such a short space of time.

I cant think straight, do anything i am a total wreck, i cant interact wioth people at work because i just feel numb inside, i know this will all sound stupid after only 4 days but thats why i am posting this thread, as i have read that some that are not DX have had symptoms for years. My hat really does go off to you as it has crippled me physically in less than a week.

God i am crying now as i type this and its only 8am here, this is going to be such a long day. Also i know my Neuro appointment will not be for a few weeks probably so i know i have got a lot more of these days to come.

Again Your all truly amazing people

Chris

 

[maryroseuk]

Hi cris, my name is mary & im from the uk also, my heart goes out 2 you, i know exacally what you are going through i mean it i went through everything you are describing, maybe my story will help ease you pain and worry a little, mine started 2 years ago, out of the blue calfs started twitching non stop all the time, then it spread to my arches (feet) and hamstrings, also my tounge and arms was affectedi was too convinced i was going to die to the point i acually made a will and decided who would take care of my son, i ran up a lot of debt seeing private neuros,2 years later and 3 emgs later somthing finally clicked in my head i must be fine its been 2 tears and 4 neuros and 3 clean emgs, now i barly notice the twitches they are still there if i look but i dont look!

You will get through it i know, you need 2 see a doc and tell them how you are feeling, they put me on a mild antidepreeant and i felt a lot calmer, you will be ok chris.

I hope ive helped a little.

 

[chris_uk]

Hi Mary, yes you have helped, i have a doctors appoitment tomorrow and he will then i guess refer me.

Its just the waiting i hate. I know that something is going on, i was happier yesterday as i thought that twinging only happened after weeknes but then a few people have said it was their first symptom so it started me off again.

I know there is nothing i can do untill i see a specalist but i just wish i could take my mind of it.

But thanks for your message though

Chris

 

[lostinlouisville]

Chris

I know you are upset and that truly makes me feel bad for you. I have been sick with something, maybe even different things for 2 years. I just wish you could calm down and know the chances of you being o.k. are greater than this being serious. I have 7 kids and I don't stress very much and I believe it makes life a lot easier. Try to stay positive and know you are going to be o.k. No matter what the Dr. may say, you have to press on in life and a calm spirit and a smile on your face can make all the difference in the world to how you handle anything life throws at you. I will keep you in my thoughts and prayers and while your waiting take a deep breath and think of all the wonderful things life has to offer, no matter what state you are in. Feel better

RENEE

 

[chris_uk]

i hear what your saying, am i am trying! i have to i cant go on like this !

 

[awieleba]

HI CHris,

Well if you have read any of my posts, then you know that I can relate. I will tell you that the first few weeks are the worst. The worry and fear of the unkown or horrible. When you see your Gp, ask for something for anxiety, you will need it through this. I NEVER was on a anti-depressent, but I was crying all day and full of fear worrying about my 3 kids. It helped me a ton, I even take a sleeping pill because at night it would get worse for me and I would wake up all night long.

It will get easier to cope, it is just a new fear. You need to get all the tests done and hold on the fact that you have not been told anything yet and that you are still strong.

Have you had your potassium checked? I was low and had a nonstop twitch untill I got an IV of it.

Please get something for your fear, I couldnt even go to my nephew's holy communion with crying and back at the house I felt like a zombie. My In laws were sooo worried, they had NEVER seen me like that. I am always the one smiling and talking and wanting to have fun, so this was out of character for me. I am now able to cope even though I have the same fears....

I wish you luck and peace.

april

 

[olly]

hi chris

like everyone else has said ask your gp for something for your anxiety.
as a none urgent case it may take upto 8wks before you get a neuro appointment,so in the meantime you may benefit from some medication.
i have to however correct you on something that is causing you anxiety.
that is those who mentioned twitching as one of there first symptoms would have most definatly had some neurological weakness at the time also,though they may not have known it till it was pointed out to them at there neuro exam.
my weakness was noted at my first neuro exam 6months after being ill,i started noticing the twitching after that.
even in pls twitching is a common symptom,mainly to do with the nerves being irritated by the umn symptoms but unlike als there is no lmn signs or atrophy.
is this your first neuro appointment?
have you had any tests yet?
if the answer to these questions is no then you may have a long way to go on the road to a possible diagnosed.
hang in there,try to relax a bit. i do know how you feel,it is hard all the not knowing.
take good care.
caroline:-D

 

[chris_uk]

Hi

No all i have had so far is one doctors appointment, he said to go back in a few weeks if it was still doing it and he would refer me. I cant wait 2 weeks though so i am back in to see him again tomorrow.

My calf does feel stiff now but i am thinking its because i keep tensing it to see if its twitching when its tense.

All this started with a twitch in my face on saturday morning that i looked up!

I have been woundering if i have always twitched in the calfs muscles and just not noticed it, however they are so apparant and annoying that probably i havent.

Chris

 

[ladyk]

Hi Chris

Like the last few posts, I agree, for now, get some medicine for anxiety. It will help you to relax. Early in my twitching I was mad freaking out and thinking I couldn't live like that. Now, it's been over a year and I twitch even more but I've found ways to cope, deal and even LIVE with it. A lot of positive attitude has had to be learned from reading the posts of how the wonderful people on here handle similar symptoms whilst not knowing what the heck is going on. Take good care, I sure hope that you start feeling better soon. :mrgreen:Karen

 

[BethU]

My title says it all really, everyone on here is sooooo much braver than i could ever be. God i am crying now as i type this and its only 8am here, this is going to be such a long day. Also i know my Neuro appointment will not be for a few weeks probably so i know i have got a lot more of these days to come.
Again Your all truly amazing people Chris

Chris ... here's a saying frequently heard in 12th step groups: maybe it will help. "Don't judge your insides by other people's outsides."

The heroic ones in the battle against ALS are the caregivers. The strain on them is sometimes beyond belief, yet they hang in there and keep their PALS going.

If you get a "label" attached to your bunch of symptoms, whatever it might be, you'll find that the issue is not, "OMG, I'm going to die! (well, yeah, aren't we all!)" but rather, "OK, how do I handle this? What's the next step?"

I would like to say that the dread of ALS is worse than the disease itself, but that is glib, and also not true. This is a horrible disease ... but there are many, many other horrible diseases out there. In fact, there are no pretty diseases to die from, that I know of.

My brother was 53 when he was diagnosed with lung cancer in January, 1981. He was a big guy ... 6'4", ex football player, very athletic, healthy life style, etc. He died on July 1 of that same year, weighing 120 pounds. I have now lived 5 times longer with bulbar-onset ALS (2 1/2 years) than he did with lung cancer (6 months). Yet, a million people cough every day, and so far as I know, none of them immediately thinks "OMG, what if I've got lung cancer?" and runs to an oncology clinic. (Well, actually, I might, but that's a different story! )

I do sympathize with your anxiety, as I have been there. I know how the dread of the unknown can scare the stuffing out of you. But getting a diagnosed takes time, and you might as well enjoy today while you're waiting, as this day will never come again.

On man, here I am on a soapbox again. And I've been trying so hard to cut back!

BethU

 

[olly]

well said beth, you have to put all your life into living with mnd not dying from it.
my dad has possible altziemers,my aunty starts chemo this week for secondary lung cancer...................me? i am going strong .
i think theres a saying "you can never kick a good horse down",something like that lol.
thankyou so much for your compliment on my new avater.
it is olly(oliver) my 13yr old baby who died oct 07 a week before my diagnosed,he was 10yrs in this photo.
take good care.
caroline:-D

 

[chris_uk]

i thank you all, i know i need to calm down, its just not easy when i think i have this disease. im hoping i will feel better tomorrow when i at least get referred to a Neruo. I just hope i dont have to wait 8 weeks !

Chris

 

[crystalkk]

[Quote)
On man, here I am on a soapbox again. And I've been trying so hard to cut back!

BethU[/QUOTE]


Beth,

Please don't cut back, I really enjoy your post and I'm sure many of others do.

 

[suzannj]

Hi Chris,
Please find and read my most recent (?) post under the title "Terrifed Mommy of 1 Year Old". I hope it helps you......as I'm sitting here at this very moment twitch-twitch-twitching the day away (oh yes, and cramping too!). Long story short, it's been 5, maybe 6 months by now. Started out of the blue one day - just like you - and I was just told by a neuro / ALS specialist "Whatever this is, I am 100% sure it's not ALS" Am I still worried? Yep. But I'm not crying everyday like I was before. I think I won't be completely at ease until a year or so has passed with no weakness or atrophy. SOOOOOOO much easier said than done....but try, try, try and not be so obsessed with this. The harsh realities are:
1) You have a while yet before you get to see a neuro
2) Even after that, you'll have testing done....again waiting a while for scheduling and then results
3) Even if...if...IF...God-forbid it was ALS, (and statistics are on your side) you couldn't do anything more than you're doing now anyway

Live your life. Why waste another precious day - or even moment - making yourself sick over this.
Take care, I hope that helped -
Suzann

 

[chris_uk]

hi

Many Thanks for your reply and yes you have helped, i have been reffered to a Nero now just waiting on the day.

It really is horrible feeling like this, i keep tensing my calf muscle up as i am convinced i have dents in them! just one more thing for me to keep worrying about!

Chris