Morse36
New member
- Joined
- Jun 16, 2018
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- ME
- State
- ME
- City
- Budva
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.
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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