FALS knocking at my door Repost

[rusty_pecker_head]

Well, I made a post about FALS some months back. The thread was closed otherwise I would have posted on it. I haven't been back to this site since then. The crawling in my arm is still there and now I feel my left hand becoming weak. It was time to tell my family about the news. Things are pretty messed up with my family. They are the ones to seem to be in denile and I have to be stronger than ever. Since I have already proceesed alot of my feelings towards this disease, mentally I am in a better place than them. This week I am going to go see my doctor and show her the twitching in my arm. I am sure I will be seeing a nuerologist shortly. I don't want to offically start this journey, and I am not looking forward to but it needs to be done. I still have hopes of not having this messed up disease but I know the odds aren't good for me. I am technican that works on high dollar hardware. I am worried about my job cause working with my hands is very important. I have seen some good news lately about stem cells research, and finding a common cause between all ALS cases. There might be a better understanding on how to isolate the probem and work on a cure. Has anyone else heard any news of new ALS breakthroughs?

 

[Ms. Pie]

Have you been to your doctor since your symptoms began? Or is the appointment this week your first? There is some promising news about Dex but it won't be available to the general public for some time yet. They'll be giving trial patients that had been receiving the placebo the real stuff in October this year. Then the rest of us as soon as FDA approves it. That's all I know. Good luck with your upcoming appointments!

 

[rusty_pecker_head]

First appointment coming up this week. I guess I am a little scared.

 

[Ms. Pie]

I'll be thinking of you this week sending good energy your way. Just do deep breathing exercises when you feel anxious. Anxiety is all in the breathing. Good luck!

 

[Zaphoon]

Ms. Pie,

You are a sweetheart!

 

[momap53]

Good luck at your appointment this week.

ALSA (ALSTDI) and MDA Quest magazine publish news about ALS. Johns Hopkins Packard Bell center has a news feed for fb and the NEALS consortium offers research and Clinical Trial news as well. CDC dot gov has Trial info too.

 

[scotslassie]

Good luck this week with your appointment. Fingers all crossed for you.

 

[Wings]

Hey Rusty - i would love you to post any latest discoveries - links etc - i did spend the last half of last year looking very closely into stem cell but decided against it for now... keep your emotional strength/serenity up

 

[Wings]

another quick question Rusty how and why does a thread get closed? Is it because you were away for a while?

 

[Toto's Dorothy]

Wings,

To answer your quest ion. In or der for a thr ead to stay open, peo ple must con tin ue to po st on it. After 30 days from the last po sting, the thr ead closes.

Also, some thr eads my be closed pre mat urely due to the con tents. This is done by the "own er" of this for um or mo der a tors.

Hope this helps.

 

[rusty_pecker_head]

Thanks for reading my post. I will try and keep this thread open and update with any news. My family and I are very driven to be informed so I can share anything I learn. Like wise please post anything that may be helpful or informative from any readers.

I have not been to the doctor yet. My sister has been my rock as of latey and has been giving me some good advice. I am trying to find an ALS specailist local here and avoid the HMO crisis. I fear that I will be tossed around from one doctor to the next and some months later finally be seeing the right doctor. If this is ALS and fear in my heart it is, months or even a week for that matter is a long time for someone who is sick with ALS. My family is growing very restless and wants me in the doctor like right now. If I can't find a specailist soon, I will just have to bite the bullet and go see some random doctor at the "vet clinic"/ HMO.

 

[Nikki J]

Have you looked at University of Colorado? they have al als clinic.
But you should probably start with your pcp both because of insurance issues and she likely could get you an appointment sooner
good luck

 

[HelenL]

Are you a veteran? If so. try to see a neuro there first. The twitching is not necessarily the issue, it's the weakness, and the docs will be able to see if it's "perceived" vs. "clinical". Hope that you find something else, and stay positive! Good luck and keep us posted.

 

[rusty_pecker_head]

I am a veteran, thanks for reminder

 

[rusty_pecker_head]

Well I went into the doctor. I showed her my arm and we did a series of reaction test. It was pretty much what I expected and I now have an appointment with a Nuero in a few weeks. She wasn't an ALS specailist and I think I may have been the first person in her career that she has seen with ALS like sympoms and a strong family history of FALS. Well I guess I just hold on from here and prepare for the worst and hope for the best.