Old 11-12-2017, 04:20 AM #1 (permalink)
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Default Humbly asking for experiential input

Hello I am mid 40s yo male with a background in the medical field. I would like to ask anyone if their symptoms started like mine and any recourse I would have pending.

4 months ago my legs started be tired and heavy proximal but wide fluctuations. I am a very anxious person and als fears came in years ago but were alleviated. This came back and wide body diffuse fasciculations happened and I took this as a benign finding. I have very unusual tremors at night that is more like a vibration sensation, all over my body that sometimes would resolve with neck posturing but not always. I chalked this upto cervical spine issues that I know Iíve had.

Recently, however, I started to slur speech with articulation. Not always but sometimes. L instead of s or s instead of th etc and it happens rarely but very noticeable to me and much more than I would expect normally. This put me in a massive fear mode and anxiety for als/pls and have been a huge tax on my wife and family. I still held hope for anxiety related issues but scheduled emg

Emg showed no obvious findings but I asked doc to do tongue and he did. This was normal also (although this was only muscle in bulbar area that he did) and this relieved me and much of my anxiety. No hyperreflexes except in knee mildly hyperreflexic.

A few days later as celebration my parents took me out and while eating a crab cake I had food stuck repeatedly. Then French fries and this hasnít gotten better despite anxiety relief. Like others here I need a sip of water to take it down. I donít know why dysphagia started after clean emg. The bulbar symptoms are what bother me the most. Since they donít seem to be better.

If you would be so kind to answer a couple of questions for me.

1. Did anyone start this way?
2. In light of normal emg by local doc, (mri of brain done last year was normal, Lyme and acetylcholine testing normal) should I seek another emg opinion at als clinic of sorts?

I have been destroying my life and family and they donít believe me as they attribute it to anxiety which I know exacerbated it. I plan on going on medication for anxiety relief to see if this helps also.

Please help if you can and thanks again
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Old 11-12-2017, 11:14 AM #2 (permalink)
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Default Re: Humbly asking for experiential input

The normal EMG is reassuring. I recommend seeing an ENT as I think you’ve got something going on, but not likely ALS.
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Old 11-12-2017, 01:03 PM #3 (permalink)
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Default Re: Humbly asking for experiential input

Thanks karen, i was doubtful of als until bulbar symptoms started. I dont see atrophy anywhere although tongue atrophy is a bit of later finding.

I am certain the ent will say reflux (which i have and has exacerbated with stress), and while i have read reflux can cause swallowing issues, i assumed it was intermittent. Still i will take u up on it and see ent...ive already started some high dose omeprazole...we will see

This still doesnt explain articulation problems....has anone ever had this with anxiety? My only worry is that this may be pls vs way too early als. But as u said emg is reassuring for the latter.

This board amazes me with all the selflessness by individuals here. While many here are great human beings, i hope that the one good thing this fear road i am on will enable me with is my new insight in life which so often goes foresaken—into trying to enjoy life to its fullest and be as giving as many of you are...esp if mnd is not in my cards. Truthfully the hardest thing to cope with is the feeling of not being there for my very young kids and putting my family through the difficulties.

May God bless every one of you and your families.

Last edited by Happyseeker : 11-12-2017 at 01:12 PM
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Old 11-12-2017, 02:16 PM #4 (permalink)
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Default Re: Humbly asking for experiential input

Nutrition, hydration and sleep can play a huge role in speech and swallowing. As you say, a normal EMG that included the tongue leaves you in the clear relative to bulbar dysfunction. The ENT is a good thought to close the loop and might refer you to an SLP for an eval. An increasing body of evidence associates high-dose long-term omeprazole with other complications like cognitive decline, so I would plan to have another plan, ultimately.

Best,
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Old 11-12-2017, 09:18 PM #5 (permalink)
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Default Re: Humbly asking for experiential input

Thanks Laurie

Will see ent this week and you are certainly right about the sleep thing. Need to get a lot more of it.

I will only take omeprazole bid for two weeks.

Will keep u guys informed of status and thank you for caring.
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Old 11-13-2017, 09:46 AM #6 (permalink)
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Default Re: Humbly asking for experiential input

Can anyone with bulbar symptoms tell me if jumbling words and letters is a sign of the problem? I would imagine since muscles are affected it shouldn't be and its more nasality and actually being able to say sounds, but today at work I feel like things are getting even worse for me. I pronounced malnuTrition, malnurition, am developing a lisp sometimes.

I am very anxious and can not stop thinking about the way I speak.

I will be seeing the ENT today but I know the ENT cannot say anything about the articulation and jumbling of words as my vocal cords are not the cause of those things
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Old 11-13-2017, 11:47 AM #7 (permalink)
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Default Re: Humbly asking for experiential input

ALS is about muscles not being able to move because the nerve in the brain is destroyed and can't send a signal to that muscle.

Look in the mirror. Move your tongue up and down, left and right. Make some faces and gargle. Say the ABCs. And don't worry about it if you see your tongue twitching--they do that normally.
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Old 11-14-2017, 05:44 PM #8 (permalink)
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Default Re: Humbly asking for experiential input

Thanks atsugi...

Just as an update, I saw the ENT and he did note significant reflux on endoscpoy so he said keep taking reflux meds fro 2-3 weeks.

speech issue is persistent and I have minimal improvement in swallowing, although the globus sensation I had is improved.

twitching now predominantly on left side, of course! doing hoffman babinski jaw jerk etc repeatedly...

does anyone know if reflexes change before emg findings or is it the other way around.

As a side note, I am in the health field and did a lot of research on als. Its interesting but it appears that genetics may play a more prevelant role than thought in the same way one would be prone to autoimmune diseases. Maybe there is some virus (recent research about HIV analogies) that triggers this awful process. So far the testing for autoimmune medications haven't been overly promising, but a reaction to mitochondrial stuff would be more challenging to figure out. [I would post this in another area but I don't think I'm allowed to as a new person seeking advice]

God bless you....
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Old 11-14-2017, 06:29 PM #9 (permalink)
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Default Re: Humbly asking for experiential input

Reflux can cause so many problems including voice changes, difficulty in swallowing, hoarseness, etc. It can even cause heart palpitations. There is a book called "Dropping Acid" and it is an excellent book for combating GERD.

Stay hydrated, don't eat withing 4 hours of lying down, and try to stop worrying about ALS.

We really can't give general medical advice here. Please understand that the people who answer your posts are dying of ALS, caring for someone who is dying of ALS or sticking here to help us after they have lost a loved one to ALS.

If you are still anxious, please see your GP.
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Old 11-14-2017, 09:50 PM #10 (permalink)
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Default Re: Humbly asking for experiential input

Thanks again...

I have a serious question about the emg i did. My speech is not getting better and i am now taking anxiety meds.

Researching the emg findings i dont believe i had a negative emg. My tongue emg was done not through the chin but on the sides of my tongue...

Furthermore, the noise never went quiet on the tongue..i realize the tongue is a very active muscle, and it is hard to quiet it down, but it was never quiet like my other muscles so how would they be able to determine denervation/reinervation?

I realize many on this subforum are anxious but does anyone know enough about emgs to say whether a “quiet” emg on a muscle is required for accurate diagnosis? This is important as i may need to seek another opinion.
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Old 11-14-2017, 10:33 PM #11 (permalink)
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Default Re: Humbly asking for experiential input

That is a question you need to ask your doctor. Please write down all your concerns and see a doctor.
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Old 11-15-2017, 02:34 PM #12 (permalink)
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Default Re: Humbly asking for experiential input

Thanks kim, I will try to ask my doctor but I am not happy from what I have read...my symptoms are persistent, still with speech issues with aticulation and swallowing is now exacerbated.

Like many others, this whole ordeal is a major stress for me and I cannot even spend time with my kids without balling...I am not as strong as many of you.

Is there any PALS in the baltimore dc area that knows a good als clinic I can go to for a second opinion and EMG? I would really appreciate it...

I believe Hopkins and GW have one and I am not sure about NIH...

thanks again
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Old 11-15-2017, 02:51 PM #13 (permalink)
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Default Re: Humbly asking for experiential input

I see no reason to distrust your neuro. Tongue emg is an accepted bulbar alternative. If you are not relaxed the emg will be noisy and yes they can tell the difference

However re local places. My sister was dxed at GW and received her second opinion at JH. NIH has brilliant doctors but they are primarily a research facility.
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Old 11-15-2017, 07:50 PM #14 (permalink)
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Default Re: Humbly asking for experiential input

Nikki did she like jhu more than gw? I dont like the trials in jhu... but i suppose they are well reknowned

Thanks again...

Btw update i feel my swallow is worse...small pieces of food get stuck in the back because i feel i cant make that final swallow....rice,etc i feel that this really is it..also burping is on and off..sometimes feels hard to burp if i have burped a couple times...

...im avoiding kids tonight cuz i really think i will lose it in front of them...
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Old 11-15-2017, 08:08 PM #15 (permalink)
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Default Re: Humbly asking for experiential input

Your only positive test showed reflux. I do believe you are getting yourself worked up unnecessarily.

She liked the doctor at JH better but I think you should be looking at seeing ENT, GI or PCP not another neurologist next.
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