Old 10-03-2018, 05:53 PM #1
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Default Communicate with Dr & Advice

Hello All,
First of I would like to say thank you for opening this forum to people like myself that dont know whats going on with us and are scared sh-less. I think its great that your open to helping both people with ALS and those that are not yet diagnosed or that are just suffering from anxiety or even other problems.

I will spare you all my long winded story, i been reading the post it and several post for a month or so because of course DR google suggested this disease, but also it led me to you guys which have helped a lot of people either move on or deal with the disease.

So my big issues have been the lump in throat and some difficulty swallowing. I started to get worried so i started to focus on it. Dr suggested it might be my GERD, so i took the Omeprezol but the issue hasn't resolved.

Accompanied by the lump in throat feeling i been feeling like when i swallow if i have saliva it goes down ok, but then more saliva feels like it builds up quick and can feel watery at the back of my mouth and foamy towards front. So i keep swallowing and then on the 2nd or 3rd swallow i feel like i have to push it down. This causes some discomfort and small amount of pain. Also, i been getting some hoarseness in my voice, specially when talking to much and my vocal cords feel irritated, my mouth feels really dry and the saliva issues start again.

When i drink water, if i continuously drink, im fine, but if i put an amount and hold it in my mouth then try to swallow i feel like i have to make an effort.

Aside from all that, my jaw and neck muscles have been feeling tight, specially when chewing and that seems to affect the swallowing also. I been doing neck stretches by raising head up, pointing chin up and seems to help some.

I do have some constant pressure discomfort close to the vocal cord area, even if press near that area i feel litle pain nothing major. Also, my throat gets super dry making my hoarseness worse.

I can still eat, though i struggle and now even nervous when i eat chewy food like meats ect. I can drink liquids fast.

Lastly the other things that made me start going to the Dr and coming here was that on the side i had started to have what felt like tendinitis in my feet and some of my forearm/triceps/shoulders.

Dr Visits: So i went in GP, she did all the rheumatoid testing, all clear on that. Went to ENT, camera showed some irritation but nothing major he put me on antibiotics to see if it would help, no real change has occurred. I finally went to Neurologist, and guess this is more pertinent info, she did all standard strength/walking/reflex test, all looked good. Then sent me in for EMG/ECG(?is that right?).

EMG/ECG all came back normal, felt pretty thorough, Dr tested arms, legs, feet, hips, fingers. But did not test my tongue, neck or any other mouth areas.

So my questions to you all is, how do i communicate with my Drs if i still have swallowing symptoms. They said everything is fine, but the swallowing issue is still ever present. At this point i dont know if its ME causing or if its something wrong causing it. Sometimes i swallow fine sometimes i dont.

I would hope you all could help either clarify my symptoms based on your experience so that i can ask the right questions to rule ALS out.
I dont even know if its possible to rule it out if i am in to early, some Dr suggested that things may need to develop further to confirm something. And i dont know if this is early symptoms or just nothing.

Also, i can fully understand if i am being overly paranoid and if you all think i am i can accept your guidance, i just think about my kids and naturally it scares me.

So if you all would spare some of your super valuable time to maybe either help me communicate some symptoms to the Drs that you see may be of concern or if you want to bring me back to earth from anxiety land if you think i am up there i would appreciate it.

BTW, i do have a exam referrals for Barium, and Mystheria Gravis which i am waiting on.

Thank you very much from 42 yr old father. I think i covered most of it in this messy rant which i hesitated hitting submit button for last 3 days.

Last edited by Dann : 10-03-2018 at 06:14 PM Reason: Should not have posted
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Old 10-03-2018, 06:36 PM #2
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Default Re: Communicate with Dr & Advice

As you wrote....

"I will spare you all my long winded story..." ??

" I finally went to Neurologist, and guess this is more pertinent info, she did all standard strength/walking/reflex test, all looked good. Then sent me in for EMG/ECG(?is that right?"

"EMG/ECG all came back normal, felt pretty thorough, Dr tested arms, legs, feet, hips, fingers. But did not test my tongue, neck or any other mouth areas."

Your Neurologist apparently did not feel doing your tongue was needed even if you presented all the symptoms you posted above. This doctor is a highly educated and highly trained.

Again,

"...she did all standard strength/walking/reflex test, all looked good. Then sent me in for EMG/ECG."

And...

"EMG/ECG all came back normal, felt pretty thorough, Dr tested arms, legs, feet, hips, fingers."

Good news... ALS is not present.
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Old 10-03-2018, 07:08 PM #3
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Default Re: Communicate with Dr & Advice

I have some of the same swallowing symptoms and I do NOT have ALS. I do, however, have GERD. It took several weeks for my symptoms to improve on Omeprezol. At no point did I ever even think about ALS when I developed GERD symptoms because my husband had bulbar onset ALS, and his swallowing issues are nothing like what you describe or what I experienced. You are not describing ALS in any way and you had a normal neurological exam. Again my husband was bulbar onset and he did not have an EMG on his neck/tongue area. It picked up problems where he was not even having symptoms yet.

Work with your doc and follow-up with ENT or maybe even and allergist, but you are cleared of ALS.
All the best,
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Old 10-04-2018, 09:42 AM #4
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Default Re: Communicate with Dr & Advice

Thank you CodyClan, I appreciate your honesty and taking the time to read that long winded explanation. I been on Omeprezol double dose for a couple weeks now and single dose even longer, we will see if it helps. I been on and off that drug for several years now.
The EMG comment was very helpful thanks.
I just never had the difficulty swallowing & neck strain specially together, but i suspect that might be my brain giving a hand to the compounding symptoms. I have an ENT appt coming up and Neuro got a little annoyed at my email questions so she wants me to come back in to discuss ( i think i will go in and be more organized and bring a notepad with questions as suggested on this forum).

Again thanks so much for your help and input, thanks for letting me lean on you and vent.
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Old 10-25-2018, 03:04 PM #5
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Default Re: Communicate with Dr & Advice

I would like to ask a follow up question. Good news my swallowing has improved which seems like it was both stress and GERD, although Doc wants me to repeat endoscopy to make sure everything is all good.

My follow up question is, some of my symptoms in my mucles are same or slightly worse. My fasticulations have increased inconsistently, sometimes in my face sometimes in other muscles. Also some of my muscles like forearms rear shoulder and some of my feet leg feel tight, tingly, and sometimes slight pain and heat.
I suspect some of these to be Repetitive Use Injuries because they get worse when sitting & typing, also when driving. But they are present other times.

My question is if i had an EMG in late August and although Doc did not show me results (not sure i would know what to do with them) but said normal, if these issues and muscle pains are still present should i request a follow up EMG or what would be a time frame to request a follow up EMG? Or would i have to wait until something major changes? What has been your experiences?
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Old 10-25-2018, 04:36 PM #6
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Default Re: Communicate with Dr & Advice

No, that EMG was adequate. Would have shown anything that would appear later.
Some symptom have gotten better? That's great. ALS does not get better.
You mention feelings of tightness, tingling, etc. That points away from ALS. Pls read the sticky post tuck at the top of this subforum titled "Read before posting." It will answer your questions.

You're good to go. No ALS.
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Old 11-01-2018, 01:12 PM #7
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Default Re: Communicate with Dr & Advice

I would like to ask another question. I have a Fasticulation thats constantly going on my left tricep. Not sure if thats from Injury or something else.
Also, i get a lot of muscle fatigue/trembling. When i try to workout i get worn out, and i can feel like my inner muscles are just shaking.

Like i mentioned i had the EMG in Aug, said Normal.

But I get worried because i notice odd things, like i was carrying a drink carrier and my forearm starting burning and gets shaky. Or doing pushups my arms get real shaky sooner than they used to feels like.

Does it still not make sense to push for another EMG? Or maybe get a second opinion?
What if any muscle indications do you get before hand besides complete failure of muscle?

Im working with my Drs but i get worried, and they spend 0 time explaining EMG and how that can alleviate me from thinking its ALS, when i keep having all these muscle issues.

I am sorry i keep asking questions, i just want to make sure i am doing everything in my power for my family and myself.

thanks again for all you do. I asked for the EMG results from August, i will try to post them here.
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Old 11-01-2018, 01:38 PM #8
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Default Re: Communicate with Dr & Advice

ALS is not a muscle disease, it is a brain disease. Your muscles do not feel shaky or weak because the nerve sending the signal to move to the muscle doesn't work anymore. There is no 'precursors' to muscle failure. Truly most people say that they notice they can't do something like button a shirt or open a can of soda. Some PALS may report fatigue and other symptoms but those are a result of a progressing disease and atrophy not a precursor to it. Your symptoms do NOT point to ALS and a neuro, who has examined you and given you an EMG, has said that you do not have ALS. It is best for you to avoid this site and work with your pcp to find out what else might be causing your symptoms.
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Old 11-01-2018, 01:58 PM #9
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Default Re: Communicate with Dr & Advice

I cant thank you enough for responding, to be honest i dont know about other ppl that come here but for me its been the fact that i cant get more than 5 min with any Dr i have seen over the past 3-4 months.
I've walked in with questions and they look at me like why are you even going there and just respond no everything is Normal. But for someone that doesnt feel normal it just not a good answer.
I know they are not there to coddle you but i really wish they would just take time explain more.

But this forum has given me 100x's more information than Drs. At least you all take time to read the what might seem as silly symptoms and slap us in the face.

I guess my big misconception is that you can feel this disease coming on rather then it catching you off guard and things would just not work. Its just that feeling sometimes muscles are so fatigued that they feel like they are going to fail, thats what im interpreting. But i understand what you are telling.

Again thanks so much. I will try my best to stay away, but its really only place to speak with ppl that actually care about ppl. Thanks for the big hearts.
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Old 11-01-2018, 03:39 PM #10
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Default Re: Communicate with Dr & Advice

"its really only place to speak with ppl that actually care about ppl."


You're not looking hard enough. You need a good forum and I hope you can find it. Good luck.
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