Losing function

[SkylerSurvives]

How fast did all of you lose your function in newly diagnosed at only 20 years old muscle atrophy in right arm but don’t really notice difference right leg causing me issues but can still walk and do things just wondering how fast it takes I had muscle twitching and hyper reflex reactions for prob 6 months or so before all of it so I think I had it for a while but the decline was so gradual I didn’t really notice never got out much have depression and anxiety issues so I like to play games takes my mind of speech seems ok swallowing feels a little wierd and I get phlegm caught in the back of my through sometimes water helps?

 

[ShiftKicker]

Hello-

Sorry to welcome you to this forum. I've moved your thread to the "Could This Be..?" subforum, as it's not clear if you've been officially diagnosed. Have you been seen by an ALS specialist or had a second opinion? It helps us if we know a few more details so we can provide you with more tailored advice.

Take care

 

[Bestfriends14]

I apologize for being "one of those people", but would you mind adding punctuation to your post. I can't make heads or tails of what you are trying to convey. Have you been officially diagnosed? If yes, where and what are their suggestions for next steps?

 

[KimT]

I'm sorry some symptoms are bothering you. Function loss is different in many PALS. Some lose it first and that is their presentation and others have other symptoms before losing function.
It's best to work with your doctor if you haven't already.

If you don't have a diagnosis, start with your GP.

 

[SkylerSurvives]

Yes I have the emg noted denervation and he said I should look for a second opinion but he is pretty sure

 

[Nikki J]

You absolutely need a second opinion from an ALS specialist even if this first was one ( was he?). Everyone does but especially at your age. Did they do genetic testing?

 

[KimT]

Can you get into Mayo in Rochester? I suggest them because they work as a team in a multi-disciplinary setting. You'll be able to see several specialists in a day or two. They may uncover something that isn't a motor neuron issue.

It's very important, as Nikki said, to always get an opinion from an ALS specialist and a second opinion from another ALS specialist.
I'm sorry you're so young and have to worry about illness. Try to stay calm and busy yourself with things that make you happy.

 

[SkylerSurvives]

I’m just here to ask what I did wrong to be diagnosed with this at 20 it all started with swallowing issue and a little weight loss and some leg pain and stomach pain and many many doctors visits with no one understanding what’s happening I’m not scared to die really I’m just scared of being trapped in my body and how I would cope I just was about to get married weird thing about this is the swallowing never developed into speech issues speech is still pretty much perfect it’s just breathing has become a little more difficult so my speech is less loud and more how do I put it I can’t talk for as long before needing air ig but I did have another question sorry for the long post does anyone else have variability in there weakness like during the day it will get a little better then all the sudden it feels worse idk why but I’m weak yet still walk still pick things up can still flex my muscles but emg showed denervation very clear atrophy and hyper flexible muscles I am getting a second opinion from an als specialist now tho if anyone could help I’d appreciate it to be clear I have an als diagnosis ik people move posts here

 

[lgelb]

Skyler, I moved your post to continue in your earlier thread because your diagnosis is unconfirmed and you mention some unusual aspects. Please keep posting here for now. Where are you getting your second opinion? We could also be more helpful if you care to post your deidentified EMG report.

Best,
Laurie

 

[wishmobbing]

I don't mind a long post but I do mind that you don't use punctuation at all. It's very hard to read and follow what you're saying and asking for.
A second opinion is always important. Especially if you're so young and present with mild and partly non-ALS-typical symptoms. It would greatly help if you tell us more about your diagnostic process. When is your appointment with the ALS specialist?

 

[Bestfriends14]

Would you please post your de-identified EMG, the summary/conclusion part, that says you have been diagnosed with ALS? You list some very atypical symptoms, so with the EMG results, that would help members better give you advice. And please, for the third time, use punctuation. There are some members, like myself, who have trouble discerning big, solid blocks of texts with no paragraphs or punctuation.

Also, as asked previously, what are next steps? Have you been prescribed medication?

 

[Nikki J]

You can ask about a voice amplifier.

However, really please meet us halfway. Use paragraphs and punctuation. If I can you can.

Also was this an ALS specialist and did they offer genetic testing? I asked before because those 2 answers tell us a lot about how likely this is. As we just saw in another thread, though, even ALS specialists are wrong. Somebody was told to expect diagnosis and was even started on Riluzole by an ALS specialist in a big clinic. Instead they were diagnosed with myopathy ( much more likely when you are young)