Lack of hope...

[nightwolf_mk]

Today I had a bad day. I was returning to my home and thinking... three years with these symptoms and no answers... Every day with these things... muscle pain from the top of my head until my feet, muscle twitching in almost all of my muscle, strange feelings in my throat and no answers. Every time I went to the doctors they say "go home, you are fine"... I don't know what to do anymore, some days ago I was going to my work and while I was crossing a bridge I had to stop because the pain in my legs. I stopped and looked down and I started to think... I could jump and all this mass will go away... I didn't do it because my family, they wouldn't understand this... Even God's power is a doubt for me now, I grew up learning all about God and his power and miracles and hearing that he wouldn't leave us alone in moments like this but since this started it seems that he didn't do anything... as the time goes by I started to lose my faith... I don't now what to do next. Sorry for my message but I had to talk to someone and it's hard to talk with someone who doesn't have something strange going on in theirs bodies because they don't understand our feelings. I wish I could have the courage that many of you in this site have.
Sorry (again) for this message...

 

[crystalkk]

nightwolf,

I do understand what you are saying, it's been 2 1/2 years without answers. Please hang in there and think of your family.
But in a way we are lucky we are still walking and talking (maybe not as good as before) and don't have that diagnosed as many on this site.
There is no need to apologize we all have those bad days.

 

[awieleba]

Nightwolf~

I do understand your feelings. I have only been dealing with issues for a year and my symptoms get worse daily and I am sent home as well. IT is hard to make a plan for my life or know what to do because I dont know what my body is doing. I dont know if I have MND and to prepare or if I will go on like this for years. It is hard when you have such drastic changes in your body but no answers. I have 3 young kids and It seems so over whelming. BUT, I can walk and it sounds like you can too? That is a good thing, wouldnt you like to be able to walk with pain then not to be able at all? That is what I tell myself. ANy day that I can take care of family and get about with pain or not is a good day. I have lowered my expectations, and i use to be an athelete of sorts. I have the muscle pain and more. I have pulled closer to God in this nightmare, believe it or not. I was mad at first and then started trusting in him. I stopped Asking God to fix me and started asking for strength. I get it, I feel it and it is good. It may not be what I want (I want to feel better) but I know that this is stregthening my soul and all that I do on a daily basis and it will work for the good of God. When things happen like this it is for our soul and that is more important than our body. My faith has been in a tender place, I cant accept not being there for my kids but I have to have faith. The other choice leaves me more alone so I choose God and know that no matter how this turns out that It will be ok in some way. Hold on to your faith and know that God has not left you alone, and if you need to talk please pm me

 

[hopingforcure]

I feel for all of you totally. I went through a tough tough time to get a diagnosed. I was so frustrated and sad. I have a dear dear friend (Jenny), and dear Olly, just a few who have been through a long troubling road to answers. We all understand completely how hard and frustrating this all can be. We are all in this together, and trust me we all feel for you guys please just write to any and all of us, we understand your pain and utter feeling of defeat. Take what you can do and enjoy it, smile when you can, and cry when you need to. Live today, and enjoy the moment. I am so sorry for what this diagnosed and symptoms do to so many, my doctor now look's like he has answers of an easy diagnosed with spinal fluid. I feel like I was lucky to be part of a study, that will provide quicker answers and hopefully a way to a cure quicker.. Bless all of you.

 

[crystalkk]

hoping,

The study that you are referring to, what are they looking for in the spinal fluid?

 

[hopingforcure]

Hi Crystal, they are looking for a protein in the spinal fluid. They have created a patton on the test, they say it could be widely avaliable soon. It is on the asltdi board.. Hope that helped, How are you doing?

 

[crystalkk]

Hoping,

Thanks for the info, I am still declining.
How are you? Is your diagnosed Pls?

 

[awieleba]

Hoping~

Is the protien that they are looking for specific to als? or that is what they are thinking or looking into? I wonder if it is the same protien or similair when people have a tap and have protien in there and they saw autoimmune? what do you think, I know you are a researcher so to speak!

 

[vmd]

nightwolf:

Please know that all of us here care. It is because we care that we want to make sure you are fine and that you don't hurt yourself. I would encourage you to talk to a trusted priest/minister regarding your concerns. Besides our little corner of the world, you can also call 1-800-273-TALK, a national type of crisis hotline. I see you don't live in the US, so this line may not work for you. Where do you live? I am comforted by the fact that God has promised me He will not give me a burden greater than I can handle and I pray that you will also. Keep us posted and I pray your spirits are up today.

 

[hopingforcure]

Hi guys and girls,
I will forward the article to you guys, It was a protein that the doc's found in 92 percent of the als patients, it was high in the ALS group, and it was also looked for in people who just had cramp's and muscle weakness, and not als.. but the als group may have just given us a biomarker for ALS, so if we can find how to diagnosed. this monster, maybe treatment will be on the way. And maybe so many people will not have to go through the monster of diagnosed. this monster. I went through it just like you girls and guys, I think the worst thing was I new to much, so the local and regular neuro' just pushed me off.
By the time I got to the specialist, after begging, he new it was bad in the first five minutes. It has progressed so much now, that a child could diagnosed. me, but why did it have to get to that? I am glad I was part of a help for future pals to get a quick diagnosed. I hate to see you guys, like Crystal, April, Zaphoon, Cindy M.. all you special people suffering in wait..I am here, I am glad when my non stop RESARCH...OR OCD.. can come in handy..lol

 

[nightwolf_mk]

Hi everyone. Thanks for your support. I'm not from USA, I'm from Brazil. Unfortunately we don't have great centers of neuromuscular diseases like Mayo Clinic for example and the only available options are too much expensive so I can't continue with the investigation regularly. I had to go to the doctor, make the tests and see the results and wait to raise money to continue my diagnose process. But I'm afraid because I don't know If I will have condition to work for a long time because I know that my condition is getting worse, whatever it is. If I have to count on "popular medicine" (I don't know the name in English, I mean the medicine that the government provide to the people and you don't have to pay) I would have to wait too much time to get the tests and appointments so I have to do all by myself. I think that in my case I will have to wait until I get worse to get some kind of diagnosis and I'm sure that it will be difficult to get any kind of medicine for free, so what I'm doing now is trying to work as many as I can to raise money and If I get to the point where I can't work anymore at least I will have some money to support me for a while. I'm trying to be positive, but this is very difficult for me now. I don't know what to do next. I can't do any plans for my life because I don't know if I will have time to achieve these plans. I'm a little desperate now and I don't know what to do. I don't know if I should continue with my faith in God. They wouldn't put more on you than you can cope but I know that I don't have enough strength to deal with all of these things. I wish I could go back in time and say to me in the past "don't do this surgery"... because all of the symptoms started after my thyroid surgery. Thank you one more time and I hope the doctors make some advances in these kind of diseases this year.

God stay with you

 

[hopingforthebest]

God says, in His Word, the Bible, I will NEVER LEAVE YOU NOR FORSAKE YOU. It sounds like you were brought up in a family with great faith. If you don't have one, get one, a bible that is. Read Paul's gospels and what he went through for Christ. It will help you cope and it will help you be strong in Christ Jesus. There is nothing that you are going through that He doesn't know about. Go to His word and get peace. Come to the USA and get a diagnosis for this illness to rule out ALS. If USA says not ALS, live your life and get a good neurologist to help you with what symptoms you are experiencing.

There are hundred of people that search this site for some suggestions, help with their disease of ALS! They would do just about anything for "any" doctor to say, "Don't think it is ALS". What a gift that would be. To live life without ALS.

We are not, none on this site that I have ever come across, doctors. Neurological symptoms are very obvious when diagnosising ALS, 95% of the time. We only hope it is a "fixable" symptom. In my husbands case, he saw a top neurosurgeon on the east coast of NJ, in fact I work for him. He said, I wish your problem was fixable but it is not, with that, first visit, diagnosed ALS. We then went to 3 top neuro ALS specialist and all said at first visit, it is ALS.

It is mind boggling that people are on this site and do not have ALS.

 

[stgeorge]

I took my husband to 3 drs and had his records rev by 2 drs before one finally told us 95% sure ALS. My dr told me that no dr wants to give bad news. She told me she thought it was ALS before a neur dr told us. It took 8 mths, we were told 2 days before our daughters 21st bd and we waited a week before we told her or any family. It as now been 2 years since symptons started. I feel this website is for us to say how we feel and not be judged. I don't want to take about our personal lives with anyone I know. Am so greatful for this forum.

 

[brendapals]

stgeorge,
Welcome to this big forum family! I hope this finds you and your family doing well. I was diagnosed 8 months ago tomorrow and am still "kicking"!:smile:
Feel free to jump on here anytime you need/want to-I'm sure no one is going to judge anything you or your husband want to say. (And if they do-our dear moderators Al and CindyM will take care of it for you)
Have a great week!
-b

 

[Mottom]

Hi mate,
Thank your lucky stars you are still able to do all you can do after all this time. Make sure you enjoy every day as you dont know when the symptoms start progressing very quickly.