27 and just diagnosed with ALS

[bob_s]

Greg,

I'm so sorry about your diagnosis. My neurologist discouraged me from taking RiluteK. But when I got a 2nd opinion last week, that neurologist recommended it. I haven't decided yet and will have to do my own research

Bob

 

[berniec74]

Hi Greg,

I am a bit older, 49 but also recently diagnosed. I cannot get the drug Rilutek covered by my insurance (doctor is appealing) but the hard cold truth is like you said...prolongs your life 2-3 months? Personally I won't go in debt for it but certainly it's a very individual choice. I am still having hard time coming to terms with the fact that I have this disease. I take it one day at a time but somedays I'm angry and depressed...other days I feel great and then when I go to get up and walk it hits me like a ton of bricks. I'm currently on a walker but not sure how much longer I can safely do it. How are you doing now as far as your physical challenges? Keep positive! I do allow myself some "pity parties" but I don't let them last too long

 

[KissJ]

I agree with Skipper66, as my husband has been on the Dex trial and I am sure it has helped him. We were able to do two cruises this past summer. He got to see our two sons get married this Fall and find out that the one son and new wife are expecting already! We just enjoyed a wonderful Chirstmas with all four of them! He is on both Rilutek and Dex. Anything you can do...Do It. Keep weight on! Take the drugs and Pray! God Bless!

 

[greg45]

berniec74- i feel the same way about the going in debt thing. i have yet to get angry or depressed just broke down once when i appologized to my wife for not being able to be there for her and the girls for as long as i had planned. i grew up without a dad and when we had children i made a promise to my wife to be there forever and that my kids would not have to grow up without a dad like i did. well now i can't fulfill that promise and it hurts. ok enough about that. maybe i havent got angry because it hasnt yet sunk in? just feel like there is no way this is true! some of my physical challenges include anything with my hands i.e. tying shoes, typing on computer, buttoning pants, and also carrying more than just my body weight up stairs like trying to carry groceries in or carry my 10 month old little girl up the stairs.

 

[greg45]

Kissj - trust me i will be trying everything i meet with a neurologist today that has been involved with als for a long time and has done a bunch of research on it. hopefully he will guide me in the right direction

 

[bob_s]

Greg,

What did the EMGs show? Did you have blood tests? Why did they give you short course antibiotics for Lyme disease? I'm just wondering if they ruled out everything else.

Bob

they call it a clinical diagnosis because there is no test for ALS. I have had 3 emg's and the last one was done at the Mayo Clinic in MN. they say that the chances of me having ALS in my 20's is 1-165,000,000 (yeah thats million) and the chances of winning the lottery is 1-140,000,000. would much rather win the lottery so i am hoping the specialists at Mayo are wrong as well.
i would say i noticed weakness probably around 4 months after i noticed the twitching. let me know if you have any more questions

 

[greg45]

bob s - below i have given you what the mayo clinic told me and reported. you will see the reason for the antibiotics for lyme disease below. i met with an infectious disease dr. for the lymes and was tested again and it came back negative. he thinks i only seen a positive sign because of the IVIG's i was given. hope this answers your questions. please ask more if you have some.

Lyme IgG testing was mildly positive (IgM negative); and therefore, he was treated with a course of doxycycline.

EMG performed here showed active denervation in the upper and lower extremities and
thoracic paraspinal muscles. Paraneoplastic antibody reportedly showed slightly positive N-type calcium channel
antibodies. A PET scan performed here was negative for malignancy. The brain and C-spine MRIs with and without
contrast performed outside and reviewed here in Radiology were unrevealing. Pulmonary function tests revealed a
mildly decreased vital capacity and maximal respiratory pressures. Electrolytes, CBC, GM1, hexosaminidase level,
PTH, serum copper, HIV serology, and CSF analysis were normal or negative.

 

[cervus]

Sorry about your diagnosis, Greg. It's always awful but yes, you are so young. My husband took Rilutek almost from the day he was diagnosed. If it did help to prolong his life, I'm grateful he was on it. Who knows? Thinking of you. Yasmin.

 

[hangingon1]

Greg, considering that it may prolong your life 6 months, it is not worth it. My wife who suffered for 3 yrs. with this monster of a disease tried it and it made her real sick. Add to the fact that is worth more than gold, I personally think it is a sham. I know you want to try every avenue available to you and I am all for that, but it really doesn't work. Greg, keep your head up. If you want to fight this thing, fight it. Read all you can at this website and learn what is ahead of you. ALS acts differently on everyone, but maybe you can beat it. God bless.

 

[skipper66]

I feel you really need to try something besides the Ritulek if you truly want to beat this Greg. You might take it as well but I don't feel it will save anybody. You will beat this Greg if you trust in God and keep a good attitude.

 

[greg45]

thanks everyone. kim - i am going to take the rilutek and also i will am going to be on the Cytokinetics trial as well. hope it works
Bob i replied to your comment but it said it had to go to a moderator not sure what that means? but it was just the results of my emg and why i took the antibiotics for lymes. if it doesn't post let me know and i will try again

 

[laurel]

Greg for some inspiration you might like to look up the threads started by Ted Harada--I think his forum user name is TedH5. He is in his 40's I believe and is participating in neuralstem cell trials. Lots of hope there and if you even g o o g l e his name and A L S you will find out about how he has been helped. He is a real hero and it might inspire you and give you a ray of light and hope.

Laurel

 

[pearshoot]

i was in ck-357 trial part a , it works

 

[Lolita]

If you dont mind me asking Pearshoot.. How has it worked for you? Would somebody who might be starting with bulbar be able try the ck357?

 

[olly]

Hello greg welcome to the forum.
Its so sad for those younger with young familys not knowing what the near future will bring.
I am praying your progression will be a slow one and you have many years to watch your children grow up.......and who knows they may find a cure soon.
Dont ever give up greg,keep fighting.