Bindy

It is my mom who has bulbar onset. ALS association has one other patient up here they know about too. So that makes 3! Would love to talk more.. want to meet at Flour Garden one day?

You will be fine my dear,,keep God with you,,let Him handle all the stress and worry. He is so good and loves you so much!

Take care,,and keep your chin up,,,smile

Bindy,
Can't believe I did not see you til now. We are in Nevada City too! My mom went for 2nd opinion at Forbes/Norris but is being seen at UCD. Any reason you are not going there first? So excited to be able to talk to you. Let me know if you chat more...

Hi Bindy, love that name...sooooooo cool..... I am very glad that you are getting in to the Dr. so fast. That is wonderful. Waiting is just awful.....I am thinking of you and you are ibn my prayers . Let me know when you can.. Big Hugs, Linda

If you relax the EMG is not too bad, if you tense up it can be quite painful. So please try not to worry about the appointment. You have a Miata? I have always loved that care but it was not practical for where we were. Enjoy your trip, it should be enlightening. I pray the best for you!

Hi Bindy,
Sorry for the late reply. I don't visit the Forums much anymore and so I didn't see your messages until today. If you click on my name, you can see my latest post / health update in full. The brief version is that no, I have not been diagnosed with ALS, but rather something called Benign Fasciculation Syndrome. It's been one year and nine months since my symptoms began. They are all still very much present (twitching, cramping, intermittent weakness, etc.) but I have no loss of function.

I hope with all my might that you DO NOT have ALS. Be glad you found these Forums though, they were a God-send for me. As I said, I don't come here very often anymore so I wish you well and hope you hear that your symptoms can be attributed to something other than a motor neuron disease.

Take care,
SuzannJ

Hi,

I understand you haven't been given a dx yet, it is really frustrating I'm sure. You know something is definitely wrong, but they haven't figured it out. It does take time to do all the testing that is required.
My symptoms started in Jan 09,I was dx in Oct 09,,,that's a lot of testing! When I found out, I cried for 2 days. Then the most wonderful thing happened, I gave it to the Lord. He can deal with the sadness, anxiety and fear a lot better than we can! Since I did, my life has been peaceful and serene What a wonderful way to live! Many people in my life have told me that they feel wonderful and safe around me, makes me very happy I will pray for you, so that you can inspire many others too! I'm sure you do already
You sound like a wonderful human being, your eyes are so bright and your smile makes me feel warm inside!
Chin up beautiful, and keep smiling! All the goodness will come from that.
Remember all your blessings.

Many hugs coming your way T

Hi Bindy!!

Thanks for the really nice visitor message as what a nice surprise. Well i do not have ALS but i do have CIDP which is an autoimmune motor neuron disease that's paralysed my feet and weakened my legs since 1996 and so i research all the neuro diseases especially those like MS and ALS as CIDP is kind of in the middle of those two diseases.

Anyway i'm enjoying this site as i never knew about it until yesterday and have a nice day and hopefully we'll gab again.

harry

Bindy, They are saying als but not definitely - but surely some motor neurone disease. I cannot walk at all now and today went to the hospital at Montauban for assessment and straight away they said I could have an electric wheelchair; a SELF PROPELLED wheelchair makes my arms and shoulders hurt after a very brief while and makes me very tired. Know what you mean about leaning forward. Even with sticks I was at 90 degrees from the waist. But I did not have the feeling about the feet bones that you have. Honestly now the diagnosis is the least of my worries. aLL i WANT IS THE NECESSARY aids to make life liveable. And as today at the hospital, they start off wanting to know the diagnosis but as soon as they see the state I am in when trying to walk, they seem to think the same way I do.
Love the photos!
IRIS

Hi again, I was just trying to find out what symptoms you have?? I could not find anything??? I was dx a year ago with Bulbar ALS... I was dx so fast that when I found this forum I already had it and wasn't wondering if I did. I can imagine how scarry it could be for you. All I can say is that I thought I had a stroke.. No idea that anything this bad was going on... I had some slirring and my mouth drooped a little. I sure hope you have something else. I will keep my fingers crossed and pray that you don't have this.. Linda

Hi Bindy, I see that you are new on the forum... How are you and yes I would like for you to explain to me about my pain???? the pain I have starts at the top of my leg. not really as high as my hip...

Thanks for the lovely message. Your picture did not show up, maybe it is too large. There is a maximum size it can be for it to upload.
Look forward to the pictures. We have 6 grandchildren and they are all doing great! Such a blessing.

Good Luck with the neuro appointment.

God Bless! Joel

got cut off! So sorry you have the bastard disease, too.
Yes, this tooth thing is weird and I cannot help feeling that our nerves are up the creek and it could affect our mouths. But there are so many weird things that donot seem to be text book stuff.
I really really miss gardening . Hate the thought of my garden not being cared for but not much I can do about it.
I HOPe your husband is a good support. It is such a streain on carers. But the biggest strain of all is trying to get the help we are entitled to. EVerything is so hard to sort out and takes so long over here.
Anyway, Bindy, I wish you luck. Speak again soon
Love

Hi, Bindy,
ALS, though diagnosis is still unofficial; can no longer walk, arms starting to get weaker and other weird things going on physically. So so sor

Yes, I remember how difficult the dx process is. Many people on this forum gave me hope that I had something other than ALS and in my case, for now, it stands PLS.