Various Questions in Regards to ALS

[Clearwater AL]

As you wrote,

("Hi, I wrote all my symptoms but did not get replies from experienced members,")

Well... maybe this second attempt will do the trick.

If not... copy your two posts and let the Neuro review them at your appointment this February.

 

[twitchy23]

Thank you Clearwater. I would consider you an experienced member. Is there anything in my symptoms concerning to you, or things to not worry about, in regards to ALS? Best regards.

 

[MaxEidswick]

Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


-----
Max - Monday, August 18, 2014 12:03:01 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.

 

[twitchy23]

Thank you Max! I have seen this note a few times and I agree with it! I am sorry to disturb anyone. Nikki advised I could post a full symptom list if I was truly worried. I am going to my neuro, but I have to wait another 1.5 months, so that is why I am seeking opinions on if others who really know this horrible disease first hand on if they think my symptoms, and the way they are presenting, sound familiar or concerning in regards to ALS. I thought that was the reason for this sub-forum, but if I am wrong I deeply apologize.

I read the stickies, and wrote that I am confused about them saying that pain not being a symptom, but people have said it was present, even early on. I also read that with ALS it's a pain, but not nerve pain, but I don't understand what that means.

I will visit the websites you proposed and will donate there as well. Thank you!

 

[Nikki J]

Hi you are right I said I would try to answer. I also said succinct and that was not! Lol!
Never had pre cramps like you describe. First ones were full blown.
I really don't think early ALS hurts. But when the muscles don't hold the body together anymore it can hurt a lot but by then the di agnosis is unquestionable. Some people have other issues and ALS and have pain from those
Those other sites are good. Hope you can find a good fit for yourself.
For ALS research donations I personally like Mass General Cure ALS research fund or the packard center at Johns Hopkins but there are many options

 

[twitchy23]

Hi Nikki, thank you, and yes I knew I messed up with my long post. It makes perfect sense what you said about pain. I appreciate the time you and everyone had taken. I will also visit the sites you mentioned for donation. Peace and best wishes to all in the new year!

 

[mltg]

I'm not an expert but have seen one of the best MND doctors in my country and I was assured that mostly of cup have been having symptoms of twitching for a while - and you have - an EMG would pick up anything suspicious. If yours is clean then that's a good sign. Also my hand can be made to look like yours if I contort it into a grip like the one in your photo. Try the about bfs site -it's amazing how much pain and weird symptoms it causes. I know the wait is long but anxiety can ramp up twitches and spending time reading about bfs symptoms that match yours may calm you down. Good luck!

 

[mltg]

That should have read if you've been having not mostly of cup. Apologies

 

[ECpara]

Twitchy, the mere fact you mention some of your "symptoms" have improved through physio and shots, then weakened again 3 times since October 2013 points away from ALS. There is NEVER any improvement in ALS, it is a disease of constant progression. Also, many of the things you mention happen to PALS after they have had the disease for quite a while, such as muscle pain (because they are using muscles that are wasting); muscle weakness (because the muscle is wasting and has visibly atrophied), and excess saliva (because the tongue has atrophied to the point of not being able to swallow). That soreness and pain in your shoulder would not be indicative of ALS onset. Yes, my husband has that but he's had ALS for 3 years and his arm and shoulder have wasted away to the point that it gives him pain to try and use it. Big difference. His ALS is bulbar onset - he's never experienced tongue biting, no globus in the throat you speak of, although his ALS is so bad now he chokes on mucous because his diaphragm is failing and he can't cough. No tongue thrusting you speak of. Yes, he has excessive saliva but that's because he hasn't been able to swallow for two years now. He's never had body jolts or jerks, ever. All he had at onset was slurred speech. That's it. When someone has onset of ALS, it is typically in one area, not all over the body. Maybe the tongue (like my husband), or a hand that won't pick up objects as easily, or a foot that trips you because the ankle keeps collapsing. Your symptoms are all over the place, which also points away from ALS. I hope some of these comparisons have helped you. ALS shouldn't be your worry. I always tell friends to donate to the ALS Association. Thanks for wanting to help. Blessings and Happy New Year!

 

[twitchy23]

You are all so wonderful to have taken the time for me, and the others on here.

It is my birthday today, and after much dread and worry in the past few days, you have all made me feel better and I can't thank you enough. This morning, with the birthday money I've received and more, I've donated to alsa dot org (stated in honor of MaxEidswick and ECpara from the ALS Forums Website), plus I've donated there before for many walk teams, donated to Mass General and John Hopkins ALS Research sites (and stated in honor of Nikki J from ALS Forums Website), plus I donated to this website early on. I will continue to support ALS Research, of course.

There must be something going on with me though. I woke up in the middle of the night gasping for air, which I will attribute to panic at this point. My left arm that has been bothering me went stiff for the first time (not a cramp, was not painful), so I couldn't sleep after these things. I will leave this site and search for answers with my doctors and maybe other support forums. Only if any of my doctor's visits or tests come up that are concerning for ALS, will I return, but as many of you stated, it does not look like what my symptoms match up to.

Please take care, I will never forget your kindness. You and everyone affected, and a cure, will be in my thoughts and prayers. Happy new year!

 

[Nikki J]

Happy Birthday! May you have many many many more. Each happier than the one before.
Thank you for your generosity. If you want to see some of what Mass General does with donations read here https://www.alsforums.com/forum/als-research-news/27562-mass-general.html#post328099

 

[twitchy23]

Thanks for that link/Information! I used to live in Boston for a bit and was actually a patient at Mass General once (for something different), so I know how reputable they are. I trust this and the other associations to keep pushing for more therapies and, ultimately the cure of course!

 

[ECpara]

Happy Birthday and thank you for the kudos and your generosity! Glad I could ease your mind.