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Nolesac

Active member
Joined
Jan 11, 2016
Messages
44
Reason
PALS
Diagnosis
12/2015
Country
US
State
Florida
City
Jacksonville
Good afternoon everyone,

I was diagnosed by ALS specialist at Mayo Clinic here in Jacksonville just after Xmas, I have limb onset ALS. I am 28 years old and have no family history, although my grandma did have dementia unkown if it was FTD or not.

Symptoms started around 7-8 months ago or atleast that is when i noticed the considerable weakness in my wrist, i play a lot of golf and hockey is how i noticed the wrist and grip issues in my dominant arm. Luckily your dominant arm has less importance in golf so i can still play effectively, hockey not so much.

So far the arm is still the only area affected, although the fascinations seem to have spread a little bit could be due to the enormous weight of stress this process has on me.

My Diagnosis only took around 3 months but included 3 MRIs, xrays, loads of blood work, lumbar puncture, and a couple NCS/EMGs.

I am not particular happy to be talking with you lot, but grateful that there is a place i can talk to someone. I dont really talk about my issues with anyone i like everyone around me to not be sad all the time which news of this would certainly cause. I havent even really talked to my GF about this which i know i need to do. Any suggestions on telling everyone would be great.

i should say that Mayo was my 2nd opinion, my first from St Vincents Neuro muscular specialist was MMN due to family history of auto immune disease, age, minimal signs of upper (brisk reflexes only). No conduction block found but apparently that is not abnormal for MMN. I am attempting to have IVIG to rule out MMN, hopefully not rule it out but you get what i mean.


Thank you all already very helpful over on the other board.
 
Welcome Nolesac,
Remember this is a big shock and it's very early days.

I think you do need to talk with your gf, but others can wait until the two of you kind of get your heads around it all. I was with my husband through every doctor appt and test (it was me that made him go to the doctor in the first place after 6 months of slurred speech, swallowing issues and hysterical laughter), so we kind of did all that together. Your gf must know something is going on? It will be kinder to talk with her and even let your emotions show and let her do the same. She may be wondering all kinds of things! That way you can start to make a united front at how you want to proceed from here.
 
So sorry to welcome you, Nolesac. Two years in I still have trouble telling someone new about my husband's ALS--it brings it all back to me. Those that really understand, well, the shock and horror on their faces. ARGH. We announced on Facebook after telling family personally. Do it in your time, but yes, those closest to you are probably already wondering. You also might find comfort in someone near you knowing.
In the meantime, we're always here. We understand.
Becky
 
So very sorry to welcome you here.

We have all faced similar challenges of who and when to tell. My wife knew immediately, of course. At first I did not tell many folks outside of family. After awhile, it became apparent to everyone that something was going on and I opened up. Now, I tell anyone who has an interest (obviously, in an age-appropriate way).

Informing other people gives them the opportunity to help you in ways you could never guess. I encourage you not to bear this burden alone.

Steve
 
Welcome to the club no one wants to be a member of. I remind my friends that all that is working is still me and the only thing that is not working are motor muscles. Since I'm being profiled by the local newspaper everybody in town knows I have ALS. I also write a blog for the paper and have an ALS warrior sticker on the back of my power chair. Mine started in my right hand in 2007. I had a probable diagnosis in 2009 and a definitive diagnosis in 2011. I'm still breathing, eating., and talking. I wish you the best of luck and the slow progression I have been blessed to have.
Hollister
 
Nole,
Sorry you find yourself in our merry band.

Before you discuss w/ your gf, you may want to think about her PoV and what, if anything, your relationship was heading toward before your dx. Framed one way, it will be difficult for her to stay. Framed another, it will be hard for her to bail. I'd get facts/explanation out of the way before you get to preferences and what now.

Likewise, as Tillie notes, telling other ppl may be framed somewhat by whether you are/will be a couple. We've discussed the "how to tell in social settings" in other threads --maybe have a look. Even with family, doesn't have to be drawn out -- people have the Net and they need to process as well.

Again, welcome, but so sorry.

Best,
Laurie
 
Thank you everyone
 
Sometimes it works well to direct other people to The ABCs of ALS which is a 3 part video that gives a great explanation. That way you can tell them, but to save you explaining over and over what is so hard for you to get your head around, they can sit down when they are ready and get the same information.
 
Laurie can we talk I don't know how but what you said all I think about
 
Sure, I sent you a pm.
 
Nolesac, as said by the others it's unfortunate that you have found yourself here. Your age takes "rare" to the highest improbability being that it rankles so many discussions here concerning just that. I'm still learning, like others, so just asking... if you have been diagnosed with ALS why are they wanting to rule out MMN?
 
Please don't make Nole feel worse; 4.2% (506 of 12,187) of US Registry pts were 18-39. It's not unknown. Here in our area, it was a big story when a well-known female basketball player was diagnosed at 27.

Al, it's also not unknown to trial IVIg in a young probable ALS dx w/ family hx of autoimmune dz.

I hope we can relinquish any fixation on "young ALS" as next to impossible as it's simply misleading to say that. It's rare, but there is, after all, a reason why TDI has the "Young Faces of ALS" out there [you might want to check out its page, Nole, though I won't link it since they raise funds]; it's not rare enough to dismiss it blithely.
 
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Nolesac, welcome and sorry you find yourself here. I'm in a similar boat myself, 32, limb onset, no family history.
As said already its a massive shock and early days. It took me months to get my head around the diagnosis but take your time and let people you want to know in your own time.
You are in the right place, this is a great forum with plenty of experienced PALS and CALS, I've gotten loads of helpful info here so dont be afraid to ask questions.
Andy
 
Laurie, I don't see anywhere in my reply to where my intent was to make him feel bad. There have been endless posts in the DIHALS sub-Forum concerning those in their 20s. And... replies posted by Moderators! If this Forum is not to ask questions, where's the purpose of this Forum clearly indicated on the opening page... it's for those who wish to learn about ALS and MNDs. I guess I forgot to employ the word "Welcome" in my reply but... anyone diagnosed with ALS is an very unfortunate circumstance. I hope it's still unfortunate to be here.

I asked a question.

I would hope anyone who posts they have diagnosed with ALS/MND wouldn't mind answering a few questions... Where were they diagnosed? How old are they (if they don't indicate). Where did the onset begin? Questions concerning tests.

Nolesac, I regretfully say, "Welcome aboard". As you can see (hopefully before it gets deleted) this can be a lively Forum but you'll find very knowledgeable and supportive people here. Please participate and share your input.

PS Laurie. There have been countless posts/replies (by Moderators) how rare ALS is just in itself. As you post statistics you have found... hundreds of times on this Forum new members have been reminded all how rare ALS is. Again... by those with ALS and Moderators. And some have gone out of their way to indicate the rarity of PLS to the minute percentage versus ALS.

Someone that has been diagnosed with ALS automatically gets a revered position in this Forum (deserving so)... hopefully they are here to contribute their diagnostic journey so others can learn, compare. And not take offense if a member asks a question. A former Moderator (Rest in Peace) asked many questions of new members in the Newly Diagnosed sub- Forum.
 
Its ok i took no offense. I will answer any questions asked. Mayo gave me the ALS diagnosis, it was my other Neuro that didnt believe MMN could be ruled out entirely so to be sure he wants to do the IVIG, however its been a week now and still negotiating with insurance so who knows if it will happen.

Thank you all for your responses.
 
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