ALS Worries: What Should I Do?

[Chris2]

hi its chris

still unsure if i will keep appt. my husband told me why do you want to know if you have an uncurable disease "i dont want to know if you have it" Hes told me trust the 4 neros. but i tell him how ofter to they see als patients ( probable never) not at 39. one emg normal without facics one normal with facics but told still normal. they all tell me to forget als you dont have. I really think i need to go th nmd specialist but believe me i'm scared. I dont think i can live this way either though. i do enjoy my kids in the mean time they are keeping me sane and busy. without them i'd be curled up in bed. what a nightmare (started in march) but my what a couple of months its been. I'll let everyone know what i did. Pray for me whatever the outcome. thanx to all have a great weekend

 

[EyeoftheWild]

I believe your husband is right, but not for the reason he has given you. The correct reason for not going to another neuro is because you do not have an incurable disease. You know this, in your heart of hearts.

A Dr. will not, and can not tell you that you need not fear anything. He/she will couch all that they say in medical speak and use equivocations such as: "it seems you are fine," "I don't see anything at present." You may derive some comfort from another pronouncement of being "all clear," or you may feel worse afterwards. What will you do then?

What you are looking for is for someone to tell you, categorically, that you are entirely well, and have nothing to fear in either the near, or far future. I can be such a person for you, although you may not believe me. I am a stranger to you, but I can see with absolute clarity that you are entirely well, save a few issues that can be resolved "in the twinkling of an eye."

The emg will identify that which it is not, but how will that help you? You are still stuck with "what is," and that also leads back again to wondering about the "what is not." In other words, you will still be the same person, with the same set of symptoms and you might just end up freaking out again and again. "What if he missed something," "what if I forgot to mention an important symptom," "what if," "what if," "what frigging if."

I am not angry with you, only impatient that you get on your road to wellness and joy....right now. Never mind looking to be happy, happiness is something you look back on and say, "hey, I was pretty happy then." It is joy that you must allow to invade your person. If you recognize the inherent joy of being alive, of being a life force then you will still have that to guide you through any sorrow. You see...the joy does not evaporate in such a case, it remains present and eventually illuminates the sorrow away.

Have your test if you must, but do not look for it to "change" your life...it does not have that power, only you do. You are a marvellous and wonderful person. Your children know this, you will see it in there eyes when they look at you...hopefully this is true of your husband as well. LOL It is to this love that you can reach out, and establish a pattern of your own wellness. Do it now, don't wait for the weekend to pass agonizingly.

Were you not also born upon this earth just like so many others, are you not of just as much value? Do not squander your right to love yourself, nor the qualities that make you a person who is worthy of being loved. It is the simple things that affirm our lives, the flower, the wind in our hair...these are a testament to you, to us being alive.

You ARE well, now go out and fasciculate with joy.

Cheers,
Basso

 

[StephG22]

before you go you need to make a pact w/yourself that you will believe what he says and go on to live your life. There are no second chances so don't waste another minute on things that are out of your control and on diseases that I think deep down/logically you know you don't have. Hang in there!

 

[Chris2]

your seem wonderful. and would think i was too if you knew me before these crazy symthoms. I am the first person to help and encourage others and speak of the simple pleasures of life. Like to be lucky enough to be loved and honored and blessed to be a parent. I've never taken my family for granted not one day. this is an ugly demon trying to bring me down. i'm fighting the fight and now i too need people thanx again

 

[coolwiz4110]

Well said Basso.

Joy is an often overlooked force in life, and I don't think any of us can get too much of it.

By the way you should really take up writing get well soon cards. LOL