Anyone else in their 20's with ALS?

[hwbissegg]

Hi. My name is Heather and I was diagnosed with ALS about a month ago. I'm only 27 years old so it is extremely odd for me to have this horrible disease. I was just wondering if there are any other females (or males) in the same boat as me.
My symptoms started about a year ago. I've been an athelete all my life and played collegiate volleyball. I now coach volleyball and play in rec leagues...that's where I started noticing differences in my strength and jumping abilities. Then the twitching started. Of course I had numerous tests done and everything was normal, including an EMG. My left foot started to drop in November and I was limping by Christmas. I had MRI's that ruled out MS and finally got another EMG...this one showed abnormalities. The doctors treated it as an autoimmune disorder for 3 months, but it didn't help. That and the fact that I had developed some upper motor neuron symtoms led to the diagnosis.
So here I am, just 27, with a disease that nobody can do anything about. But I tell you what, I'm gonna kick the hell out of it! I'm determined not to let this get me. My husband and I haven't started a family yet and we aren't going to let this deter us...we are still trying to have kids.
Anyhow, this is my story. I have a great husband, family, and friends to help me out. And for that I feel extremely lucky!
Thanks for listening!
Heather B.
SLC, UT

[lunarruna]

Hi Heather...so sorry to hear of your diagnosis. you will find much support here. I dont know anyone in their 20s with ALS but there certainly are some people.
There is a book I have been wanting to read, a young women dxed at age 33 who then got married and had a kid ...it is called "I remember running--the year I got everything I ever wanted-and ALS" by Darcy Wakefield. Perhaps you will find some inspiration in her book, my sis read it and liked it.
My husband was dxed at age 40 and we thought that was young! You still have much living to do...good luck to you.
Beth

[hwbissegg]

Thank you Beth! I just looked up the the book online and it looks great! Any bit of information like that can go a long way to helping someone, so thanks again!
Heather

[kazzy]

So sorry you have been faced with something like this at such a young age!!! You have the right attitude about continuing on living and doing the things you dream about. Some people may say you are mad for even contemplating children but I say you go girl!!!! If your husband is behind you in this then go for it!!!!!!

There is one girl in this forum (young gal - has her own website) who was diagnosed at age 22, I think. She will probably reply to your post soon. It seems hers is a very slow progression so hopefully your will be the same.

All the best and I will keep you in my prayers.

Kazzy

[hwbissegg]

Thanks for the post Kazzy...
I think my sister heard of that girl in some of the research she has done. I'll be interested to hear from her and see if she has done anything special to ward off the disease.
My husband is very supportive--he's my rock! And my family is great too, so I know when I do get pregnant and have a baby, they will be there for us. But thanks for the encouraging words because you're right...many people would think we're crazy!! But, hey, I can't stop living my life!!
Heather

[rolark]

Hi Heather,

My wife is a little older than you (41) which puts her in the one in a million category like yourself. She shares in your athletic background. Gail has been a horsback rider and was in a half-marathon training clinic when a inner-thigh injury led us to her diagnosis in March of this year. Her symptoms started with the Right leg - and definately has the foot drop issue.

Tim

[BWk]

Heather, I'm shocked at all the young people with ALS that I'm finding on this site and other places.I'm 58.Seems like you have a good attitude and that will help.I wonder what would cause someone so young as yourself to get this illness? Does anyone else in your family have it?I'm also finding a lot of athletic people with with this disease,not includind myself.The other person in my town with als has had als for 20 years? So not everyone is short term. Myself and my wonderfull caregivers are so sorry to see you here. But since you are here we wish you the best! Barry

[rcharlton]

Hi Heather,

Jeannie is a member of this forum. She is 27 and was dxed with ALS in 2001.

Check out her profile.

She has a web site too.

Jeannie where are you?

[wewillbeatthis]

Hello,

I have read your post and I am so sorry that you have learned that you have this disease. I am glad that you found this board cause it is full of advise, angels, just a wealth of information from so many wonderful people. I agree that you should go with your plans DON'T let anything stop you. You have a great attitude and I am one that believes that with this disease mind over matter is the key.... Keep up this attitude and if days come to you when you feel otherwise remember to post and you will feel better.

You are in my thoughts and prayers...

[TBear]

Hi Heather:
There is a patient here in Toronto who also was diagnosed at an early age and managed to have at least one child. Granted, there is a difference between a female patient going through the stresses of child bearing and a male but they, as a couple persisted.
I hope that you are successful... and that your progress is slow enough for you to enjoy your kid(s). If your journey ends before they turn into teenagers... you will have managed to have all the fun before the retribution starts!

T.

[Caper]

Hi Heather


Have you had or considered any genetic testing?

[Mike27]

Hi Heather,
My symptoms started when I was 29 and I was diagnosed at 30 back in '93. Since then we have had two beautiful children and have lived our lives as "normal" as possible.

There seems to be a correlation between young(er) people getting ALS and athleticism. I don't know why, but most young PALS I know are very physically active before getting this.

Keep your fitness up, with yoga, tai chi or something...it will benefit you later on! ALS is only a blip on your life's radar screen. How big a blip depends on your focus. You sound like you're on the right path!

Good luck and keep on this board! We have lottsa good folk here!

BTW-did you get a second opinion? There are quite a few treatable diseases that look like ALS, but are not. I had seven different second opinions!

Cheers!

[kazzy]

Oh my goodness, Mike you are another one that has beaten the odds!!! Good on you for keeping on with your life with your wife and having 2 beautiful children.

There does seem to be a connection with athleticism and younger diagnosis but is there maybe also a connection with younger age onset and longevity?

Interested to hear others' opinion on this.

I am 41 and from what I've read this is very young too considering I've been having symptoms as far back as 4 years ago(in hindsight). I was also rather athletic when I was younger and became very obsessed with body image and pumping weights after having children and not really liking the shape I had become.

Then I had mono which they at first thought was some rare, acute form of leukaemia and was hospitalised. Have never been the same since and pushed myself back into rigorous training to try to make myself better but I think there is a lot to be said about overdoing it and what effects this may have on the body!!!

C'ya,

Kazzy.

[hwbissegg]

Thanks to everyone for your replies to my message. The encouraging words do help so much.
Kazzy, I hope you're right about dx at and early age and longevity...that's what I'm holding out for!
Mike, you're a good example to me and how I can live my life with this disease!
Stephen, what do you mean by genetic testing? Do you mean to see if I would pass ALS on or what?
Thanks again to all!
Heather

[BWk]

Heather, The 5 to15% of als that is caused by genetic defects they have found 20% of the genes responsible. If you have someone else in your family with als a parent ,grand parent you would probably want to be tested.Their is a test available for this. Hope this helps. BWK

[Caper]

Hi Heather

I had my blood tested, due to having an Aunt who had passed away from ALS 30 years ago. I come from a large family and no other cases as of yet ( thank God). The test did two things. First it confirmed that I had ALS, tested postive for the SOD 1 mutation. Secondly, it identified the mutation as a SOD 1 ( I 113 T) . This knowledge tends to be received with mixed comments. Some family members want to get tested, others have said they would if they start noticing any problems. You may have the mutation and never develop ALS over your lifespan. However, you would have a 50 % possibility of passing this mutation to your children. You can also have the fetus tested.

If you are the only know case in your family, then genetic testing is not for you.

Steven B.

[hwbissegg]

That is really interesting about the genetic testing. I didn't know that they had pinpointed a mutation for ALS. I actually don't have anyone in my family who has had ALS, so I guess I don't need to get it done. But I do wonder why they don't do that test on patients to confirm diagnoses. I guess it's probably because it's very expensive, but it would certainly give many patients piece of mind to have an actual test done that positively identifies ALS. Maybe it would help people accept it better, but who knows...it's difficult to deal with no matter what!

[Al]

That test only identifies the familial gene. It is not a test to specifically identify ALS in the sporadic type which is what 90% of the people get. Dr Cashman in Vancouver Canada has developed a new blood test that shows promise for diagnosing ALS but it is still being perfected. AL.

[Jeannie]

Hi everyone, sorry for late reply, Heather.

I'm Jeannie, I was 22 at onset June 2000, dxed July 2001 now 28 and still got plenty of fight left in me. I have tried many treatments and regimes, non of which I can say really helped me apart from stem cells back in 2003, but saying that I dont even know if it the cells that actually helped.

I wont pretend ALS is a easy fight because it isn't, the one thing you do need is courage to fight the darn thing and by the sounds of it, you have plenty of it :)

Take care, Jeannie xxx

[beanie]

Hi...I am totally new here to this site, so please bear with me. I am 27 years old and have had cerebral palsy since birth. My CP left me unable to walk w/o assistance of walker all my life but I never let the CP hold me back. I am now a college graduate in 2004 and in October 2005 I was given a diagnosis of ALS in addition to my CP. I know I could hardly believe it myself and have had quite a rollercoaster year trying to figure it all out.

I have had numerous tests, EMGS, neurology consults and have had one physician say my CP was reactivated (which is not possible), and another said it was some type of progressive neurolgic disease but not sure what...my present neurologist is still sticking with ALS diagnosis but the two other physicians say that are not "comfortable" labeling it that due to my age and the CP. I have been struggling what all this means, but in the meantime since last June, I now am unable to eat solid foods, taking mostly liquids and soft pureed food. We have had a stairlift installed since I cannot do stairs and now have ordered motorized chair. In the past months, i have had PT, OT, speech therapy.

I never would have dreamed this would be happening to me at this age, but am surely glad to find someone else my age going through possibly the same things. Please let me know what suggestions anyone has as I try to figure this all out and the physicians continue to advise me just to deal with symptom treatment on a day to day basis.

I am sure glad to find this group and maybe I can find some support in talking with others going through alot of the same. Hope to hear from you all soon....in the meantime I continue to keep a positive attitude and take one day at a time....

[Al]

Hi beanie. Sorry you have to be here with a double crappy diagnosis. Glad you found us though. Sounds like you have your stuff together with the right attitude. Jump in whenever you want to vent, tell a story, laugh with us, cry with us or just hang out. We do it all here. Take care. AL.

[gilly]

hi there.
my aunt was recently diagnosed with als. since i heard the news, i've been logging on to any website possible for more information... which is not very much. this disease is such a mystery. i had no idea. i live very far from my aunt so the best i can do is send her "fun" packages everyday... which i have been doing!

what i am wondering right now is about some of you describing twitching as a symptom of als. that scares me. i have twitching in both of my legs any time i am sitting down or lying down for bed. is this a common symptom? i don't want to jump to conclusions but after reading so much about als, i am scared now not only for my aunt but for me. should i have these twitches checked out? what type of doctor would i go to? i hate to sound like a hypocondriac (spelling??!?!!!?) but i never paid much attention to my twitches (which have been happening for about a month) until i read some of your notes.

thank you for all of your inspiration. i read the postings almost everyday and i am in awe of your strength and spirit.
much love, nicole

[hwbissegg]

Gilly,
Well, yes, twitching seems to be a pretty major symptoms of ALS. But I wouldn't worry about isolated twitching. Mine came after months of fatigue and gradual loss of strength...the twitching just made me realize something was really wrong and I wasn't just getting old!! Anyhow, there are other conditions that can cause twitching, such as a problem with your thyroid. There is also a condition called benign fasiculation syndrome, where someone just has constant twitching. Plus, it is normal for your muscles to twitch sometimes, especially after working out. So I really wouldn't worry unless you develop some other symptoms. I hope this helps! Best of luck!!

[gilly]

thank you so much for your response and the info. i am sure it's nothing and i am just a little overwhelmed learning about als and my aunt's condition. what a frustrating disease. i wish i could do more for her or you or anyone with als. ugh! i have lots of hope for her though. a girl i work with, her aunt has been living for 30 years with als. and doing quite a lot! guess this is one situation where "fighting" is a good thing.

thanks again for replying so quickly. i am thrilled to have found this forum and hear the stories of such incredible people! i will be keeping in close touch.

[hwbissegg]

Just wondering if anyone else has problems with their toes curling...it makes it very difficult to put my shoes on!!

[kazzy]

Long time no speak! How are you going apart from curly toes? What a shocking time it's been for you you must still be in shock being diagnosed at such a young age. I can tell though that you aren't one to give up on life and I bet you are making the most of every day and probably appreciating life more than you ever had!!!! It's a shame it takes something like this to make us realize how precious life really is.

As you know I don't have any firm diagnosis with anything yet I have been given the runaround rollercoaster and they are now calling it an "upper motor neuron condition???" I have the curling toes thing but it's not all the time it comes and goes. Fun Hey???!!!:-?

Keep on powering on girl :mrgreen:

[xsparklingwinex]

Hi Heather,

My name is Holly. I have ALS. I am 24 years old. I was diagnosed at 22. If you have any questions feel free to post or leave me an email. I'm sorry to hear of your diagnosis.
Love, *Holly*