Status
Not open for further replies.

safari101

Member
Joined
Aug 20, 2008
Messages
14
Reason
Learn about ALS
Diagnosis
7/2007
Country
US
State
oregon
City
eagle point
Hello! My docs are sending me to an ALS Center for screening.

I have a couple of simple questions. FIrst, I have all ALS basic symptoms (that is why I am being sent for screening)

Some days I feel more ambulatory (although I can barely walk on a good day) sometimes I have have little feeling in my arms and legs, and can hardly talk (thick speech) and then in another part of the day I am better. Then I go back to having trouble speaking and swallowing.

Is this common to go back and forth, but slowly get worse over time?

Thank you!
:)
 
Hi ... I'm really sorry you are having these distressing symptoms, but so glad you found this forum. You will find lots of caring and really helpful people here.

I am no medical expert, but I think it is common in MANY different neurological conditions for the symptoms to fluctuate from day to day or during different times of the day. If you notice a pattern (like usually feeling better or worse in the morning or at night), make a note of this for your doctors. You might even want to keep a journal to see if there is a pattern.

Neurological conditions are really hard to diagnose, and the doctors will probably be looking for a number of different possibilities.

Hang in there, and best of luck.
BethU
 
Thanks Beth!

Hello Beth,

I didn't give my full profile to save myself typing. I have had a MND for several yrs. It is the opinion of several docs I have seen that I had a second Neuro. disease (prob. ALS) but I had to get worse for it to come out. (very rare to have two!)

Since I have seen Neuro's for the last few yrs. it is unlikely that their prelim. is incorrect.

The good news for me is apparently it is slow going. At least has been.

Info. enables a person. At least that is what I think. :)

Thank you for taking the time and answering this question.

Jim
 
Hello Jim!

So sorry that you have a motor neuron disease, and now doctors think there is another. This must be mind boggling for you!

The people here are very kind and informative. Some of the men go 'playful' at times....(see their little ditty about bra's...:)) I am sure you will like it here, and maybe take your mind off the cruelty of disease.

take care
lovelily
ps....I like the green printing.
 
Wow! That is amazing that you might have two things going on, but it makes sense to me that this could happen. Hope your condition continues its slow progression, and that your neuros figure it out. We've got some really smart people on this forum (I'm not one of them :)) who will be able to give you some educated feedback.

Hang in there,
BethU
 
Hello, Beth and Loveily!

I like the green type to. I also can give support. I have read a lot on neurons, my cousin and her husband watch over me. They are doctors. It is great to have their support.

I also am a wit. (Your reference to men joking) I am Christian. However I find lots of good clean fun to laugh at. Especially myself.

My goal is to get 10 of my freinds to send me $500.00 per month. Then I will send them pictures of me in the Bahamas showing how well I am doing. :-D This is my standing joke. No takers yet.

Having a second Neur. illness is numerically like hitting the lotto. Only going the wrong way! On a serious note. The first NMD gave me tools to deal with the second one.

Thanks for writing.

Jim
 
HI Jim!

what is the first mnd that you have? Are they sure it is not just a slow moving variant of one? I like your sense of humor. I am a christian also, the clean jokes are good but a few "not clean" are ok to laugh at!
I look forward to getting to know you and your jokes. There are days I need some good humor!

take care.

april
 
Post Polio

Hello!

I have PPS (post Polio)

Some of my symptoms do not fall into Post Polio, but do fall into ALS.
That is why I am going in.

Jim
 
Beth,

You have very good answers for people. I have ran into one ot two of your other posts. Thank you for your
help with folks. It is very kind.

Jim
 
Thanks, Jim! (Don't know how to make the little blush smiley.)

My cousin has Post-Polio, so I know what a difficult condition it is to deal with. He has been doing OK and fighting the good fight for a number of years now. I sure applaud his courage and yours.

Hang in there!
BethU
 
I think having to wait for the first disease has helped me have tools to wiat on this one.

(harder on my wife though)

I ache for those going thru this the first time. Having walked thru it once already I know how they feel.
PPS is tough no doubt. Thank you for achknowledging it. That disease affects everyone differently also.

Jim
 
Dear Jim

So glad you have good people to care for you including your wife. I pray that your faith is giving you that peace that seems so evident in your witty posts. Keep that wonderful sense of humor and I will add you to my "much too long" list from this informative site.

Good luck and God bless you,
Patty :)
 
Thank you Patty

Patty,

Thank you! Sometimes I guess I do not see my own wit. So I am glad it is enjoyable to others.

An older man who is my neighbor asked me to bring my humor to his
service. Shocked me. But I guess it is a compliment.

I am finishing up a small Childrens Book hopefully tonight.

Faith in the Lord has given me the rest I need to cope.

God Bless,

Jim

 
Status
Not open for further replies.
Back
Top