Looking for advice

[Aaronmandevill]

Good news guys, based on my recent tripping symptoms, my doctor decided to move up my EMG to this Wednesday! Will post any updates here and thank you again for your support!

I was curious if taking Tylenol (Paracetamol/Acetaminophen) could interfere with the nerve studies. It sounds painful so I was thinking of taking something before hand, but don't want to mess anything up with the test.

 

[Nikki J]

Always ask your doctor but no Tylenol shouldn’t be an issue at all. While it isn’t a fun test I wouldn’t think it necessary but ymmv
tripping? First time you mentioned. But there are a million reasons for that

let us know the results when you get them

 

[Aaronmandevill]

Yes Nikki mostly my feet scraping the ground while walking and tripping while jogging. I will definitely reach out to you guys as soon as I get the results, from reading other posts it seems you guys are really good at deciphering them. Currently they look like hieroglyphics to me. Doctors have been pretty good about returning results so maybe by Friday I would have some

 

[affected]

Good luck!
Interesting that you kept saying you are going to keep on running and jogging and building strength, you have had no actual weakness, and that you wanted to push and fast track things because of twitching.
Now you have fast tracked because you are tripping. I am just saying, I'm very surprised you didn't lead your first post to us with that.

Anyways, tripping is not a sure sign you will have ALS, as already said, there are a million possible reasons.
Do make sure you get your DOCTOR to interpret the EMG to you as they are examining you and are more likely to know all that is going on, whereas we just have a few changing text descriptions.

Your doctor is paid to do this, our terminally ill members are on their second page of responses here already, so please start with your doctor and let us know the results. Only ask for more expansion from us on the tests if you truly have not been given a full answer by your doctor.

I suspect your doctor will give you a full breakdown and the EMG will say if the results indicate any motor neurone involvement so if it does not, you will have your answer - you don't need to break down every hieroglyphic, the summary at the end will be quite plain.

 

[Aaronmandevill]

I had my EMG this morning, and the doctor did not speak to me in great detail on the test results. He did say that the test was normal and that he did not see any denervation. He said based on the results he thinks it is benign fasciculation syndrome, but noted that with 45 days of fasciculation the EMG was still "early". So I'm not sure if that means too early for an EMG to show anything. I am going to work out a second opinion with my PCM for a civilian clinic, but outside of that it seems I have done everything I can. I'm not sure looking at the official EMG results would be good for my worry. Time for me to let time pass and try to enjoy life in the mean time.

I wanted to come and say how much your support has made a difference with my anxiety. Without it I was in a very dark place and the information given here really helped me ask for the proper testing. I'm still a bit nervous about the whole situation, but I also start seeing a psychiatrist next week and hoping that helps.

Thank you all for taking the time to comment as I know how difficult it must be.

 

[Nikki J]

That is great news. Normal and no denervation are terms that we all wish we could have heard.

my take on this. Your tripping were it ALS related should have showed on the emg. It did not. There is a school of thought to which this doctor apparently subscribes that you need 6 months to be clear after onset of twitching though thatvis usually without an emg. However as we have stated twitching alone is meaningless and I will add that if your twitches, rather than being benign, were from dying motor neurons it should have showed on the emg.

still if you are going with the too soon theory you need to wait on getting reevaluated- otherwise you will be worried again it was too soon. In your place I would take my normal emg jump for joy and head for Europe

 

[wishmobbing]

Great news! There is not much to go into detail with a normal EMG.

 

[affected]

Brilliant, if you read our sticky post it is very clear why the EMG was not too early. We are thrilled you don't belong here, enjoy life!

 

[lgelb]

Fourth that. Enjoy your travels.

 

[Aaronmandevill]

I’m sorry that I’m back guys, it’s 4 am and I cannot sleep. My difficulty swallowing is to the point I have to drink several drinks of water with any food to push it down. I’m terrified that I will start to choke and no one will care because the ER won’t be able to determine the cause. My 3 smaller toes on left foot I can no longer move. Is there any neurologist you guys can recommend that would be available soon to see me for second opinion? At this point I am willing to pay all out of pocket and travel if needed. I am located in San Antonio Texas. The als specialist at UT health said September was earliest.

 

[Nikki J]

Ask for an ent and or swallow study. That doesn’t sound like bulbar onset but if you have trouble swallowing get it looked at.

I think 2-3 months wait is standard for ALS clinics. Covid made it worse and summer probably doesn’t help either. You can ask to be on a cancel list. You can also see here ALS Clinics/Programs, US/Canada

 

[Aaronmandevill]

I called Baylor and need to fax over my medical records before they can give me an appointment date. My doctor is saying since I took the swallow test 8 months ago and only failed the pill swallow that I should just do what neuro wants (6 month follow up). Thank you for the link, I will keep checking with centers.

 

[Aaronmandevill]

Mayo hasn’t called me back but I tried to schedule with them. I know we all say this but I really do wish I had more time to process this. The past 2 weeks my left toes (bedsides big toe) have no strength and just give to any resistance. People say it usually starts in one limb then the other but with mine it’s starting in the second limb after 2 weeks. Just noticed some of the same weakness in my right foot (toe next to big toe is first to lose connection). I don’t see neurology until Wednesday.

I know you guys say to wait on a diagnosis but I feel this is clear cut enough and would really like to get support from you guys on how fast the planning process should be for me. I bought a heated recliner that will arrive in 10 days.

I’ve been taking TUDCA/B12/L carnitine and eating 5000 calories a day to maintain weight since I had been losing a lot.

 

[Bestfriends14]

I'm sorry, Aaron, but I'm a bit confused. You have had a clean EMG, you do not have any clinical weakness, you don't have symptoms that have anything to do with ALS onset, and you've had clean clinical exams. What, then, makes you think you have ALS? No one who has examined you thinks you do, so honestly, I'm not sure why you would ask strangers on a forum to second guess the very competent doctors you've seen.

Further, and most destructive to your mental well-being, you are diagnosing yourself with a terminal illness when you've not been diagnosed. You do not have the medical knowledge to do this, and flooding yourself with supplements can be problematic for your GI tract.

Why are you following the ALS path when nothing points to this disease?

 

[Aaronmandevill]

Looking at other peoples stories, then looking at progressive difficulty swallowing over 8 months, fasciculations for 3 months, and losing probably 90% of toe strength in both feet. It just seems like a bulbar onset type of situation and I’m trying to be prepared as possible.

5 years ago I felt something was off with a lump in my armpit. The military said wait until after Christmas to get it checked. I went to ER and had emergency lymphadectomy, admitted to Stanford in 2 days and being told I would have died in 5 days if I didn’t get it checked. I have signed up for counseling to help with anxiety and have been fine for 5 years, but I really am tracking only the symptoms as they present themselves to me here.

And I continue to greatly appreciate the support. This website and reading some of the stories from longer term bulbar survivors such as firefighter have been some of the only things to calm me down. Seeing people that are so much stronger than me.