Help With Symptom Opinions

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girlypop2000

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Hi everyone!
I have read the pre-post discussion and want to acknowledge that before I continue with this thread! There was a lot of good information there and I am very grateful.

I am 21F and concerned about a possible ALS diagnosis (or something else?)

For some background, I have really aggressive ulcerative colitis and was put on immunosuppressants about a year ago due to internal bleeding and needing blood transfusions a lot and there are very rare side effects of demyelination and peripheral neuropathies.
In the last few weeks I have noticed slight weakness in my right hand (I can still do things with it like open a ziplock bag and put a key in a lock and grip a pen and type on a computer with basically no issues but sometimes it feels like its a lot more difficult to get the movements out, its more when i'm focused on it) and I also feel like my right leg is kinda shaky sometimes. I can still lift myself up on tiptoes and onto my heels with no issues but I find as the day goes on that my right leg feels weaker (kind of like my shin is shaking when I walk but not when I am sitting down). I was hoping to get some people who know a lot about the disease to give me their opinions on my symptoms. I am worried sick as I have other medical issues I'm currently contending with (I need to get ostomy surgery within the next few months) and I am extremely overwhelmed by the possibility of an ALS diagnosis on top of everything else. I have an MRI scheduled for Monday (in 2 days) and am hoping to get an EMG as soon as possible, so I will check in then with the results, I just wanted to open this thread to anyone who may have any knowledge on my symptoms. Its hard to get in touch with a neurologist because of COVID so I am currently waiting and worrying myself into an anxious mess.

Also, for anyone in Canada (specifically Ontario and Quebec) have you heard of any private EMG clinics that specialize in ALS that you could point me in the direction of? I just need answers as soon as possible.

I appreciate any information/input you can give me, and as always, I am wishing everyone the very best.
 

affected

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Sorry you are worried about a terminal illness at such a young age. Please do discuss that aspect clearly with your doctor.
I'm glad you read the post we ask you to read first, but I'm surprised you didn't find the answers in there. It could be worth reading again.
You don't have any failures and that is the hallmark of this disease.
Before you try to push towards ALS specialists, please work closely with your doctor and what direction they think the investigations should take as the chances these low level symptoms have anything to do with the rare disease ALS, are really miniscule.
 

girlypop2000

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Hi there! Thanks so much for the reply. If you don't mind my asking, (and I did see this on the beginners post, im just a little bit confused), what exactly are "failures"? Would you mind giving me an example? I've watched many videos and researched a lot on it and people say that they are still "able to use their hands" for like 2 years after the disease is diagnosed, which is really confusing to me if failures are how it is diagnosed. Does it happen that once a part of the body has been effected, it is no longer movable? Because I am still able to type however I have noticed a few concerning symptoms. I would really appreciate any clarification you can give me, I was a bit confused in the post which is why I started the thread.
 

affected

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Yes 'failures' are the inability to do something. My husband was bulbar onset so his failures were to do with speaking and swallowing.
You are reporting symptoms in your hands, and then you assure us you don't have any of the failures we gave as examples when the onset is in this area of the body.
This suggests you have perceived weakness, as does shaking when doing something.
What is more important is having clinical weakness diagnosed by a doctor.
If you want to read our beginners post, then research and start to compare your research to that post, you can save your energy and don't bother. We wrote that post to prevent having to repeat these debates over and over.
You are asking questions of the terminally ill and their carers, please understand we don't have the resources to repeat over and over.

You are best asking these these things of your doctor who can then examine you in light of concerns you raise about perceived weakness and they can tell you if you actually have any clinical weakness in those areas.
Nothing can replace an examination and discussion with a doctor. Your own general doctor can test for clinical weakness.
I hope you find answers soon and that I've helped allay your fears, as this is like jumping from a headache straight to a brain tumour.
 

girlypop2000

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Hi,
I'm truly sorry to hear about your husband. I in no way intended to abuse resources and I sincerely apologize for overstepping in this forum. I understand that you guys don't have the resources to be talking to people who haven't been diagnosed yet. I have yet to be looked at by a doctor & I apologize for any oversteps as I am an anxious mess. I in no way intended to abuse the resources of such a wonderful community. Wishing any and all people reading this all of the happiness and ease that the world has to offer you.
 

affected

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Just go see, or do a video visit with your GP as a start. You can be helped, not seeing a doctor and using the internet is not the way to deal with any health issue.
 
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