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New member
Jun 16, 2018
Learn about ALS
Firstly, thank you for the opportunity to ask questions even with you all being busy battling ALS. My heart goes out to you all.

I have also read the stickies and I want to stress at the very beginning that I am not looking for a diagnosis here (only doctor can do that) and I am also not an anxiety sufferer trying to get reassurance - I am just a (not so) slightly worried husband wanting to share our (my wife's and mine) story and hopefully get some feedback/experience exchange.

So here goes - my wife, age 35, never had children, never had any serious illness. Some months ago, she had a problem with swallowing liquids - several times water ended at a wrong place. No trouble whatsoever with solids. She put it down to work - related stress and tiredness and forgot about it. However, it never completely disappeared - coughing and choking episodes never happened again, but later (after onset of other symptoms) she told me she had to slow down her drinking and to concentrate on it when doing it.

Fast forward a month or so, I noticed an issue with her speech. Now she has always had a slight lisp (cannot pronounce her Ls and TS-s properly), but it became more pronounced, or so I thought. For example, she noticeably struggled with words Alexis Tsipras (Prime Minister of Greece - we are both journalists by profession and she covers foreign policy) and again - she had to concentrate really hard to pronounce it properly (meaning on par with her previous standards). Moreover, her left hand became what she described as "clumsy" and she fumbled with things like (un)locking the door, opening the car door and had particular trouble holding large objects with her hand - they tend to fell out (she is left handed btw).

Now she (as well as I) is a sort of person who waves medical issues away - our idea of treatment/recovery is to have a rest and good night's sleep and go to work next day or day after that. However after 4th bottle of water fell out of her hand, after she had a severe cramp in her leg (it happened in the middle of the night and the pain made her cry) and considering her earlier complaints, we decided it warranted a visit to the GP. GP discovered hyperreflexia (deep tendon reflexes were increased), ordered bloods and referred her to the neurologist.

Bloods came back fine, but neurologist detected "slight weakness" in her left hand. He wasn't able to say anything about her speech (since, as I said, she had a lisp all her life) , but after her admitting she had to "concentrate more" when drinking and after she mentioned the cramp, he ordered MRI and EMG. He discovered no noticeable atrophy whatsoever.

MRI came back all clear, but EMG showed abnormalities in her left hand and left leg (facial muscles and tongue were fine). As the neuro interpreted it, it was a "mild abnormality" (English is not my mother tongue - sorry for the imprecise medical terminology), no scary stuff but something that warranted further investigation. Throughout the session he was very cagey and non - committal and, apart from medical mumbo - jumbo, he just said something along the lines of "there is something going on here and we need to find out what". However, he ordered further testing - another MRI (this time with contrast) and some sort of "special" EMG which targets the particular areas of concern. Contrast MRI is scheduled next Friday.

Now I come to the scary part - the neuro is also my high school friend and couple of days after all this we went to a drink together. Now, as I said I am a journalist - meaning good at extracting information from people. After a couple of vodkas, I asked him to be frank with me and tell me what he thinks about my wife's symptoms. He said it can be many things, most of them not scary. After I asked what the worst case scenario was, he told (quote) "Well, ALS, but it shouldn't have started that way and I really don't think it is that". He continued along the lines of "I know what you' re trying to do but you have to be patient and wait for results since I am not sure myself what's going on here and there are many possibilities".

Now that conversation got me worried - I know obfuscation when I see/hear one and this talk smelled like it all the way. However, I am also trying to be objective (which is, I admit, not very easy, considering she IS the love of my life, as nauseatingly corny as it sounds) and I know there are lot of things pointing out away from the cause of this forum's existence. She has no atrophy, no twitching and her symptoms are slight. Moreover, from what limited medical knowledge I have I concluded that ALS starts in one place and progresses from there, not in 3 places simultaneously. She also has some sensory sensations - prickling, pins and needless and something she describes as "burning pain" in her neck - these point away from MNDs, although they can also be a consequence of stress and anxiety over the future diagnosis and therefore unrelated to the main problem.

Well, I bothered you all long enough - I will leave it at this and just reiterate that I do not expect diagnosis - I just ask for, if possible, some experience sharing and also advice how to deal with uncertainty and fear of the unknown. As I said - we are both journalists and we both have a similar trait - we want to hear news, good or bad, immediately. Not knowing for us is the hardest part.

And now enough is really enough - I wish you all good night (where I live it is midnight). We do not pray, but my wife and I will make a wish tonight - that a cure for ALS is soon found.
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It sounds like the neurologist is still in the process of evaluating your wife, with more discussion to come.

I would not try to place too much emphasis on the conversation you had with the neurologist over a couple of vodkas. It is best to wait for him to get all the data together and then sit down with him in an office setting— no alcohol involved.

If this neurologist is not a neuromuscular disease specialist, then I definitely recommend you get an opinion from a neuromuscular disease specialist.

There are possibilities other than ALS, so I would encourage you to have an open mind and open heart that it could be something else.
Hey, Morse.

Post the EMG report. We can give a better comment after seeing that.
Do you have the EMG report available? In ALS you have a characteristic pattern of acute denervation - widespread positive sharp waves/fibrillation potentials and chronic denervation - altered motor unit potentials. Minor abnormalities are a good sign.

You know, uncertainty is etched in the very fabric of the cosmos and reality. Quantum mechanics weirdness comes a lot from this - it's a probabilist world, with many possible outcomes all the time, overlapped. From personal experience of my diagnosis process - enjoy this uncertainty of the now, when so many other possibilities are on the table. Go see the neuromuscular specialist like Karen said. And in the meantime enjoy this, enjoy to the fullest possible way all the moments you spend together. Don't let a shadow of a possible disease interfere with your present. Leave it to the future possibilities, that are many right now. ;)
Hi, Morse, as you say, waiting for the verdict is nerve-wracking and boils down to "hope for the best, prepare [financially, legally] for the worst." For example, since your wife's condition appears to be progressive and unknown, it would not be too soon to consider an advance directive, Will and power of attorney. Having not seen the EMG report (feel free to post it), the doc is right that PLS/ALS could be on the list, but not very high from what you have said.

Is there any history of a viral or other illness, even a cold, or any trauma, soon before the swallowing/speech issues arose/worsened?

Sorry you're going thru the waiting game. I would make an appointment woth a neuromuscular doctor. There are so many things on the table so Id want to accelerate the diagnosis if possible
Morse, on the EMG report generally at the bottom of the last page will be
a paragraph of summary/evaluation/conclusion.

Hope for good news.

PS. After you having a few drinks with your/her Neurologist.... certainly unusual you wrote...

"After I asked what the worst case scenario was, he told (quote) "Well, ALS, but it shouldn't have started that way and I really don't think it is that". He continued along the lines of "I know what you' re trying to do but you have to be patient and wait for results since I am not sure myself what's going on here and there are many possibilities."

Key words... "I really don't think it is that"

I'd bet, hope you're going to get some relieving news and maybe great news... something curable. :)
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Al is right, “I really don’t think it is that” is pretty significant. In our path to an ALS diagnosis no one said that, not once.

If you are not with a neuromuscular specialist though I agree with Kim, do see one ASAP. It is not just ALS they are the most qualified to sort out.
First of all, thank you for all the help you gave from the bottom of our hearts. You truly are a wonderful, kind and inspirational community.

Secondly, a lot things have happened in the last 4 days and I will start with the good news - my wife got the diagnosis and it is not ALS. However, not everything is rosy - it is some sort of rare muscular disorder called myasthenia gravis. The first bloods (ordered by our GP couple of months ago) apparently missed it and my wife hasn't so far had the ocular symptoms that are apparently typical for myasthenia.

However, her neurologist, after consultation with a neuromuscular specialist (the only one in my country, actually), decided that weakness shown by EMG matched the pattern of this disease and ordered new bloods to be done ASAP. The results just came in - both primary (acetylholyne antibodies) and secondary (MUSK antibodies) test (sorry for the lousy translation - studying in UK didn't teach me medical English, alas) came back positive and that, together with EMG patterns, pretty much determined the diagnosis immediately.

They are starting the treatment right away and, while this is definitely not a walk in the park, they are positive about my wife's prognosis - we definitely caught the beast early enough and the docs are confident she will be able to lead a good life with no severe disabilities yet on the horizon.

All in all and considering everything - this is a fairly good outcome and we have to be optimistic. As Winston Churchill said - never, never, NEVER give up and we certainly won't. However, what we will do is to keep you all in our hearts and minds as well as use our journalistic expertise to raise awareness about neuromuscular diseases in our country, which is, to be frank, sadly uneducated, underfunded and understaffed to tackle these issues.

This will probably be my last post on this forum, so it is time to say goodbye and to wish you to keep the good fight, as you all will surely do.
Thank you for returning and telling us the diagnosis.

MG is of course a serious issue but it can be treated and somewhat managed. I hope things go well for both of you

I am very happy it is not ALS
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I thought hyperreflexia is a sign of Als and not Myasthenia Gravis? The one doctor suspected Myasthenia was the one who sended us to the University hospital after so many doctor visits. Im confused. When we got the Als diagnosis we were surprised and said but we thought it was Myasthenia? And the hospital doctor said she has hyperflexia something not happening in MG.
Wonderful news!

Actually, hyperreflexia is not uncommon in MG.
Also, many people have bilateral hyperreflexia.....including my neuro. His reflexes are more brisk than mine.
(folks, reminder of the original reason for the post, despite subsequent off topic conversation)

Morse, thank you for returning and letting this forum know of your wife's diagnosis. I am sorry this has been such a stressful time, and I am sorry for the diagnosis. I am very glad, that though MG can be difficult, it CAN be manageable. Please convey my best wishes to your wife.
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