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landofsmiles

Active member
Joined
Aug 16, 2010
Messages
90
Reason
PALS
Diagnosis
09/2010
Country
TH
State
Phuket
City
Patong
2nd EMG today and my weakness has progressed so much since the last test and with the other tests I've had that he agrees with the other neuro and is sure I have Motor Neuron Disease (ALS) :-(

He's going to get me the drug Rilutek...guess I have nothing to lose by taking it.

The diagnosis is no surprise to me as with what has been going on in the last few months with me and what I've read I was expecting this outcome. Feel a bit numb right now as I've only known for 2 hours.

Guess I will just have to make the best I can of each day under the conditions from now on. What a bummer when everything else was going so well for me.
 
I am sorry for your diagnosis. Just remember there is life after diagnosis. You are the same person you were the day before. Do your best to focus on all of the positive things in your life. The disease is what you have it is not who you are! When you have a bad day we are here for you. Stay strong and keep the faith!
 
hi . . Sorry to hear of your diagnoses . . Ted sums it up perfectly . You are still the same person so dont live with mnd . . Make it live with you! . . And support always here
when and if you need it . . God bless
 
Just had to Skype my mother to tell her. She's in Britain I'm in Thailand. Wasn't easy and hit her badly when she realised she would probably never see me again in the flesh.
 
I am sorry to hear of your diagnosed,take it one day at a time.You are in my prayers.
Pat
 
I'm so very sorry you need to be here; but we will hope to help in any way we can. Ted is right, you are still you. Enjoy each moment as fully as possible. I'm praying for you as well as your mother.
 
Try to remain hopeful and enjoy each day. One day at a time is all any of us has weather we have this disease or not. I am sorry to hear of your diagnosis. We are here for you.
 
I'm wondering if anyone here has a similar timeline to me as I feel I am going downhill very fast and wonder how long before I lose the use of my legs or hands totally? I feel it could be only a matter of weeks and I'm really worried it could all be over very quickly. I am already thinking I won't be able to handle losing the use of legs and hands and being fed through a tube and having to use a mask to breath. That's no life to me and I would want it ended before getting to that stage.

February I was 105kgs and had done little exercise apart from some horizontal stuff for 20 years or so and decided I needed to try lose some weight so started walking. Only managed about 10 minutes first day and got up to about 20 a day after a week or so but then I started to struggle and got stiffness and pain in my back. Went to Japan for 2 months and walking got more difficult there. My left leg was starting to swing and hurt and developed foot drop so I tripped and fell over a few times.

Got worse and then I started to get stiffness and weakness in my right hand. Then my right leg started to drag when I walked. I'm now in a wheelchair. I can just about stand and stagger along for about 30 yards holding onto someone. When I wake up now both my legs are paralysed and it takes 5 minutes or so to get them moving by just making very tiny movements...a move too quick and I get extreme muscle cramp in my thigh or calf. I can't bend my back so to move across the bed I have to use my shoulders and hips then swing my legs over the side and get upright pushing on my elbows and hands. Then to stand up if I don't have help rock backwards and forwards and launch myself at some point and push up with my toes and grab the doorhandle of a cupboard and pull myself vertical. I can then move slowly around hanging onto things but mainly use the wheelchair now.

I've lost 10kgs in the last 4 months which sounds good but isn't as a lot of it is muscle. My arms are quite thin now. My biceps are twitching violently 24/7...thigh muscles too and some around my stomach. If I sit for more than an hour my feet swell up and go numb. In the last 2 weeks I've started to breath heavily and have a sore throat and have to clear it every time before I speak and sometimes can only get a few words out before having to clear it again and take a breath. This is really worrying me as I know because my symptoms started elsewhere my throat will be the last thing to be affected and already seems to be starting so I feel I am going downhill fast. 3 weeks ago I could walk the length of my balcony 3 times up and down without having to grab hold of anything...now just a few paces. I'm beginning to feel a bit of stiffness in my left hand now too.
 
"I know because my symptoms started elsewhere my throat will be the last thing to be affected and already seems to be starting ..."

Hi, sorry to hear about your diagnosis. To respond to what you say above - that may not be the case as there is no pattern with ALS. Some people never have their speech or swallowing significantly affected, and they may pass away due to failure of respiratory muscles (before speech is affected). Also, some people have bulbar onset (speech/swallowing issues), but then find that levels out somewhat and their arms or legs become more affected over time. But struggling with your breath is concerning - have you had an FVC test done?

I do not know what causes paralysis of the legs upon waking, or swallen legs (my partner does not suffer from either) but it seems to me that the latter particularly can be managed in some way, and is not directly related to ALS but perhaps to lack of mobility due to ALS. I am sure some more knowledgeable PAL will respond.

Best wishes, D
 
What is FVC? I thought if I am losing muscle around my lungs that that would be the cause of breathing difficulty?
 
There is a great youtube series which I think you'd find helpful. Look in this forum for "research news", then the thread called "Director of research at the Forbes Norris ALS Center - Video", and you can get a ton of information within an hour by watching that video.

FVC is "Forced Vital Capacity" which is measured while a Pulmonary Tech does a breathing test. It is supposed to show how well those diaphragm muscles are working at the present time. Generally we get the test done early for comparison purposes. Loss of muscle does cause breathing problems. However, so does "working hard". You can be heaving for breath due to any kind of movement while your diaphragm and intercostal (between ribs) muscles are still okay.

If your feet are swelling, you need to raise them in your wheelchair. Is it a power chair with elevating legs? If you don't have that feature, then pull the wheelchair in front of another chair and put your legs up on that chair. Wearing TEDS or other compression knee high stockings is also helpful...

Ann
 
I am very sorry you are having such fast progression. My legs are acting similar to yours but it has taken me over a year to get here rather than a few months. I can only imagine how difficult it is to adjust when things are changing so fast.

One thing I would suggest is to try to avoid losing too much weight. Keeping your weight up can help slow muscle loss. Even if you have to eat unhealthy, fatty foods, you should try - even if you are not very hungry, as long as you can swallow okay.

Perhaps because I've had more time to adjust, the idea of feeding and breathing tubes isn't so bad to me. Also, many people on here use these things, and they seem to be doing okay. I hope you are able to find decisions on these matters that work for you.
 
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