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Markt2495
13th March 2012, 01:00
After 18 months of progressive weakness, curling of the hand, atrophy and facsiculations I have now been diagnosed with ALS, the worst part about it was the fact that I was so worried months ago and my neuro said it was mmn and was giving me ivig. I thought I was going for a simple check up and BAM. I have developed swallowing problems brisk reflexes now which is why he's definate. I was told to come back in two months and take riluzole, is that it? Is there anything else I should be doing? I feel so lost I sit here doubting his diagnostic skills and thinking of ways to beat it with vitamins etc. any advice on how to cope or just a hello would be of comfort.

Alienista606
13th March 2012, 01:48
hi Markt
im 37 so know haw Y fell
the more impotent cure is......stay positive AND DON'T GIVE UP
from my point acupuncture is work for me. i fell better after and give me some bust for flowing week
make some contact whit MNDA and spoke whit Y OT regarding any possible help. and ask when Y need
and............NEVER GIVE UP

Max

SGD
13th March 2012, 07:49
Welcome to the forum. There is a lot of experience and advice and above all support here.

Kind Regards
Steve

pete
13th March 2012, 08:14
After 18 months of progressive weakness, curling of the hand, atrophy and facsiculations I have now been diagnosed with ALS, the worst part about it was the fact that I was so worried months ago and my neuro said it was mmn and was giving me ivig. I thought I was going for a simple check up and BAM. I have developed swallowing problems brisk reflexes now which is why he's definate. I was told to come back in two months and take riluzole, is that it? Is there anything else I should be doing? I feel so lost I sit here doubting his diagnostic skills and thinking of ways to beat it with vitamins etc. any advice on how to cope or just a hello would be of comfort.

Hi Mark,

I take riluzole, i guess its the only thing on offer, thats why, as for Vitamins ,for me they made no difference apart from cost a lot of money, and if your diet is ok at the moment you shouldnt need them anyway , I have the bulbar form or so they think , its much the same everywhere , its a guessing game ,and takes a long time to be sure , So as hard as it may seem ,you have to try and stay positive ,dont let it become the only thing you think about , Getting you head around it does work and i guess you will hear from others who fight this disease, daily and still dont give into it , have you had any MRis or EMG testing yet ?

pete

john
13th March 2012, 08:50
Hi Mark,
I am probably the last guy you need to talk to but I lost my wife to this disease last week. We had 2 years nearly from diagnosis . There is a girl on here called Jeannie who is your age and has been living with this disease for over 10 years. If you want something to read which discusses treatments and offers real hope look at ALSTDI. Lots of threads discussing lots of possibilities. Will give you hope that a cure is probably going to come from the patients rather than the doctors. Would be nice to know it doesn't exist and just maybe soon. Stay positive and go do everything you want to do in life.
If you want a big community of sufferers around the world to talk to take a look at patientslikeme. Join and enter your illness (ALS in America) and you will find thousands of sufferers with answers and help for every problem you may encounter. Take care. Hope you are not on your own with this.

John

mik
13th March 2012, 09:54
Hi mark,
I'm mik, I am 31 and was diagnosed 2 yrs ago, firstly for me the difficult part of this was coming to terms with the diagnoses, but don't stop asking questions. Then I think you have to try and carry on living to the fullest I know it sounds stupid but honestly being positive is the best treatment I have found. Try not to be to stubborn and be willing to accept help to make life easier, there is stuff I could of done with earlier and I put it of and wish I hadnt. It will take time but it's a new chapter in life.

Markt2495
13th March 2012, 13:08
Thank you all for your advice, I have had emg and the dr said I had mmn, I'm due for a repeat on the 28th, to the man who lost his wife, I'm so sorry for your loss, you are part of this community too so yes I do want to hear from you. I only got diagnosed a week ago but there hasn't been a "oh no am going to die" moment, I have just carried on a normal really, it's on my mind constantly but theres something inside saying its the mmn and I will be fine.

Derek_
13th March 2012, 13:26
Ello Mark,

Sorry to hear another young person has joined the club, but like they all say on here, don't give up. It is very hard when you are first dx but you must live life to the full. All of the people on this forum are really friendly and helpful, so keep on chatting.

All the best Derek.

Markt2495
13th March 2012, 15:15
Thanks again, it's good to just be in contact with others. Has anyone else been given ivig? I felt as though it worked for a few weeks the first time I had it, my consultant is refusing to give it again and I believe he should just give it a go-what's there to lose, apart from the money...it's very expensive

JONESY
13th March 2012, 16:40
Hello Mark,

I was diagnosed last year with ALS and even though I was a GP and knew all the signs indicated ALS it still took a few months and all the investigations before it was confirmed. I was told to take vitamin C 500mg daily and forceval 1 daily even though I still have a good diet. By the time I can't eat I won't be able to take the tablets anyway so do wonder what is the point. The main thing is to keep positive - do as much as you can while you can and tell people of your diagnosis. You will be amazed at friendship and kindness of people

Jeannie
13th March 2012, 17:45
Welcome aboard Mark.

Markt2495
14th March 2012, 00:03
Thanks everyone, yes people do seem really nice. Jeannie is that you mentioned earlier in the thread?

luce
14th March 2012, 01:01
Hi, Mark thinking back on threads people have submitted over timek, try to eat as much as you can, keep the calorie intake up if you can. some people mentioned things like vitamins and co enzyme Q- you can look for information on this if you want to try it. my mum is convinced that if she didn't have freshly pressed juices daily then she wouldn't be here now. It is difficult to say what to do as i think MND affects people in different ways at different times. know that mum can't swallow anything but the juices with thickner and a little hot chocolate each day. other people find therapies or activities that may help with symptoms. think the best thing is to try and stay positive.

Hi Jonesy-- dont forget that if you cant eat much you can always crush medicine and add to yoghurt. hope that time doesn't come for a long long time

John- sorry to hear of your loss. think your advice was very helpful re the useful links
luce

Jeannie
14th March 2012, 10:17
Thanks everyone, yes people do seem really nice. Jeannie is that you mentioned earlier in the thread?

It is Mark ;)

Markt2495
14th March 2012, 14:28
Nice to meet you all, we're all going through the same but at different stages. Is there anyone from Liverpool here?

teynhambees
14th March 2012, 15:06
Hi Mark,

I am newly diagnosed with Kennedy's disease and like you trying to get on without it taking over my life. I would recommend any help that your O/T can give I've just had fitted extra bannister rails, raised sofa, perching stool and some aids in the bathroom to help me. I could have struggled on but I feel its better to get things sorted and make life easier now. Have you applied for DLA yet? Re: Swallowing, I found that the MNDA information they sent including a cook book with some excellent receipes a big help. Have you been referred to a speech therapist about the swallowing issues if not might be worth asking. The biggest thing I found helpful above everything else was calling the MND Connect and the folks here are stars! Don't be afraid to ask anything as you've probably gathered the response will be quick and helpful. Keep positive harder said than done at times but don't let it get the better of you!
If you contact MND Connect they should be able to put in touch with your local branch and RCDA (Regional Care Development adviser)
Scott

Markt2495
15th March 2012, 00:43
Hi Scott
Sorry to hear about your diagnosis, I have been referred to a gastro consultant te swallowing. I went to mnda meeting tonight they were very helpful and give me lots of advice and tips. I am applying for DLA which I didn't think I would be entitled to due to me still working, I'm applying for a desk job at work but it means double the mileage, DLA will help buffer the cost. As I have said before I think the consultant has made a mistake, it says 'almost certain mnd' in my letters so that gives me hope, he would have said definite otherwise

Henners
16th March 2012, 21:13
Hi Mark,
There is no magic wand out there ,it is ****.The only advice I can offer is to stay positive ,come to terms with it in your own time and dont waste any time after that .Go and have a blast and enjoy life
.Stay positive

margaretp
18th March 2012, 19:39
Hi Mark, I have a thirty year old son diagnosed in July of 2008. I think they are getting nearer to finding a drug to slow this down. Just keep eating as well as you can to keep up your strength to fight this difficult disease. It takes time to get over the shock when you have been fit and healthy but try and get the best out of every day if you can. Don't let it beat you down.

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