ConstanceCream
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I'm new to this forum, however, as I seem to be at the end of my tether I decided to post my concerns here.
I am 43 years old and a mother of four. My medical history includes Hashimoto's disease (which I have been diagnosed with about seven years ago. I'm on L-Thyroxin, and the thyroid specialist I am consulting regularly says my hormone levels are fine and there is nothing I can do besides.) Other than that I have so far been healthy. However, I have to admit that I am struggling with heath anxieties since I was sixteen, on and off, depending on my symptoms.
I have finally caved in and am willing to post on this forum, because I seriously seek advice. I'm a mess, and can barely function, because all of my doctor's visits so far have not eased my fears concerning ALS.
It all began in March this year (so, yeah, it's not been that long, I know, but that only increases my worries) with trembling, fatigued fingers in my left hand and the occasional twitch in this area. I progressed to body wide twitching until mid April. There are days when I would have twitches that come and go in almost every area, calves, feet, instep, sole, even the odd toe twitch that can last for hours, especially during the night, but is gone the next day, only to come back in my bicep, my buttock, thigh... you get the image.
As I'm no good in dealing with my health anxiety I first decided mid April to see a neurologist. Since then I have been visiting four neuros with varying outcomes.
I have been a lurker on this forum for several weeks now, and If I have learned anything then it is the fact that in order to get a diagnosis or to rule out ALS you need both, a thorough clinical exam, and an EMG, done by someone who knows what they're doing.
And here my problems start. I won't deny to have hypochondriac tendencies and trust issues, but please bear with me, and keep on reading.
The first neuro I've consulted was nice enough. After listing my symptoms and explicitly stating my fears this might be ALS she did a rather perfunctory clinical exam. (For example I was still fully clothed, how could she detect any atrophy, if she did't even look at my limbs?) she then stated that she could not find anything concerning, that my twitching was most probably benign, and that she didn't see a reason to perform an EMG. Knowing myself I asked for one nonetheless and she agreed to do one two weeks later. Not really reassured I saw a second neuro the following week. I told her about my fears and after a more thorough clinical exam she performed an EEG
and SEG (I'm still not sure what these were for?) then informed me that she didn't find anything, but couldn't rule out ALS. Naturally I was rather disturbed and asked her for an EMG. She refused to do one, because she 'didn't know where to stick a needle without seeing fasciculations, but if I would ever twitch constantly I should feel free to come back'.
In the beginning of May, about one month into my body wide twitching I went back to the first neuro to get the (first) EMG done. At that time I still hoped it would ease my fears. She asked me where I 'twitched today', and as I had had an annoying twitch in the thenar muscle of my left thumb for about three days, I told her so, and she stuck the needle right in. She did the EMG, it was all clear, so for her the case was finished. I had to beg her to stick the needle in my left calf as well, which she reluctantly agreed to do, but told me she wouldn't find anything, as ALS could be detected on a single location after examining just one muscle. By then I had read a few other stories on this forum... No wonder I was not really happy with the state of affairs and after a long weekend of twitching on both calves and feet, I decided to see a third doctor.
Well, what can I tell. This one did a NLG, did blood work, but totally refrained from doing a clinical exam. Instead he told me to undress, hop on his table and began with what was my second EMG. As far as I can recall, he examined my left calf my left thigh, and my left upper arm, and told me it was all clear. A week later he told me that my CK levels were at 219, which was slightly elevated, but not indicative of anything. I should come back in four weeks to repeat the test.
That's when my back started to twitch. The right side of my back from my shoulder blade down to the kidney area quivered and twitched continually. I freaked out, and remembered neuro number two who had told me to come back whenever I had a visible twitch. What can I say? I went there, she stuck the needle right into the twitching muscle and right away diagnosed me with MND. Not kidding. I asked her what the EMG showed, which wave forms, but she only told me, 'look at the monitor, you can see it for yourself', and of course with the twitching muscle it was all waves and noise and no flat line to be found. She immediately initiated to get me hospitalised for further examinations, and there I was after a six weeks of twitching: Two doctors said no ALS, one doctor said MND. I went back to neuro number three, told him my story, asked him how his colleague could be sure I had MND, if he couldn't find anything one week prior? He sighed and did a second EMG, at the same day, on my twitching back, right shoulder, right hand and still claimed that he couldn't find anything sinister. However he said he would send me to a neurological clinic to ease my mind, because he understood that I couldn't easily believe him, after what his colleague had told me.
One week later, at the beginning of June, about two months into the twitching I went to the clinic. Got blood work done (CK still at 204), a clinical exam, a very thorough NGL and an EMG, conducted by the head of the clinic, a professor of neurology. Sadly he and his whole clinic is specialised in MS, not ALS... He did my left side, calf, thigh, upper arm, hand, and because I had told him about my fears of bulbar onset, he reluctantly agreed to stick a needle in my tongue. He said this was not standard procedure and I got the distinct feeling he had't done it before. He didn't examine my throat, back, paraspinals,...
Needless to say, it was all clear, but I am still not convinced. I know I sound like the classical hypochondriac, but after being discharged without any findings I started to experience all the things I found about bulbar onset.
I feel my 'S's' don't come easily, it almost sounds like a slight lisp to me, my tongue and jaw feel fatigued while chewing, I feel food residue at the back of my mouth and have to swallow more that once per bite... And yesterday my tongue started to twitch.
It's a twitch on the right side of the tip, it's not continuously, but it's increasingly there whenever I look in the mirror while I have my tongue at rest. I feel like I slowly but mercilessly develop all the symptoms I have been reading about, yet the symptoms are there, the twitching increases, and after having been to four different neuros I just don't know what to think or do any longer. Whether to just ignore my symptoms, and believe this is all benign, or to seek other doctors, because I still doubt the competence of the four I've visited so far.
Sorry for troubling anyone, I know this post is way too long for any sane person to read, furthermore English is not my first language, therefore I apologise for possible mistakes, but I just don't know who to ask for help at this point. My family suffers from my constant anxiety, yet I can't control my fears.
Have the EMGs been done too early? Have they been thorough enough to detect the beginnings of bulbar onset? Why did one neuro tell me I most definitely suffer from MND? Would the professor have detected LMD when needling the 'wrong' side of my tongue two weeks before my tongue twitches started?
Please, if anybody could give me any advice, it would be greatly appreciated.
I am 43 years old and a mother of four. My medical history includes Hashimoto's disease (which I have been diagnosed with about seven years ago. I'm on L-Thyroxin, and the thyroid specialist I am consulting regularly says my hormone levels are fine and there is nothing I can do besides.) Other than that I have so far been healthy. However, I have to admit that I am struggling with heath anxieties since I was sixteen, on and off, depending on my symptoms.
I have finally caved in and am willing to post on this forum, because I seriously seek advice. I'm a mess, and can barely function, because all of my doctor's visits so far have not eased my fears concerning ALS.
It all began in March this year (so, yeah, it's not been that long, I know, but that only increases my worries) with trembling, fatigued fingers in my left hand and the occasional twitch in this area. I progressed to body wide twitching until mid April. There are days when I would have twitches that come and go in almost every area, calves, feet, instep, sole, even the odd toe twitch that can last for hours, especially during the night, but is gone the next day, only to come back in my bicep, my buttock, thigh... you get the image.
As I'm no good in dealing with my health anxiety I first decided mid April to see a neurologist. Since then I have been visiting four neuros with varying outcomes.
I have been a lurker on this forum for several weeks now, and If I have learned anything then it is the fact that in order to get a diagnosis or to rule out ALS you need both, a thorough clinical exam, and an EMG, done by someone who knows what they're doing.
And here my problems start. I won't deny to have hypochondriac tendencies and trust issues, but please bear with me, and keep on reading.
The first neuro I've consulted was nice enough. After listing my symptoms and explicitly stating my fears this might be ALS she did a rather perfunctory clinical exam. (For example I was still fully clothed, how could she detect any atrophy, if she did't even look at my limbs?) she then stated that she could not find anything concerning, that my twitching was most probably benign, and that she didn't see a reason to perform an EMG. Knowing myself I asked for one nonetheless and she agreed to do one two weeks later. Not really reassured I saw a second neuro the following week. I told her about my fears and after a more thorough clinical exam she performed an EEG
and SEG (I'm still not sure what these were for?) then informed me that she didn't find anything, but couldn't rule out ALS. Naturally I was rather disturbed and asked her for an EMG. She refused to do one, because she 'didn't know where to stick a needle without seeing fasciculations, but if I would ever twitch constantly I should feel free to come back'.
In the beginning of May, about one month into my body wide twitching I went back to the first neuro to get the (first) EMG done. At that time I still hoped it would ease my fears. She asked me where I 'twitched today', and as I had had an annoying twitch in the thenar muscle of my left thumb for about three days, I told her so, and she stuck the needle right in. She did the EMG, it was all clear, so for her the case was finished. I had to beg her to stick the needle in my left calf as well, which she reluctantly agreed to do, but told me she wouldn't find anything, as ALS could be detected on a single location after examining just one muscle. By then I had read a few other stories on this forum... No wonder I was not really happy with the state of affairs and after a long weekend of twitching on both calves and feet, I decided to see a third doctor.
Well, what can I tell. This one did a NLG, did blood work, but totally refrained from doing a clinical exam. Instead he told me to undress, hop on his table and began with what was my second EMG. As far as I can recall, he examined my left calf my left thigh, and my left upper arm, and told me it was all clear. A week later he told me that my CK levels were at 219, which was slightly elevated, but not indicative of anything. I should come back in four weeks to repeat the test.
That's when my back started to twitch. The right side of my back from my shoulder blade down to the kidney area quivered and twitched continually. I freaked out, and remembered neuro number two who had told me to come back whenever I had a visible twitch. What can I say? I went there, she stuck the needle right into the twitching muscle and right away diagnosed me with MND. Not kidding. I asked her what the EMG showed, which wave forms, but she only told me, 'look at the monitor, you can see it for yourself', and of course with the twitching muscle it was all waves and noise and no flat line to be found. She immediately initiated to get me hospitalised for further examinations, and there I was after a six weeks of twitching: Two doctors said no ALS, one doctor said MND. I went back to neuro number three, told him my story, asked him how his colleague could be sure I had MND, if he couldn't find anything one week prior? He sighed and did a second EMG, at the same day, on my twitching back, right shoulder, right hand and still claimed that he couldn't find anything sinister. However he said he would send me to a neurological clinic to ease my mind, because he understood that I couldn't easily believe him, after what his colleague had told me.
One week later, at the beginning of June, about two months into the twitching I went to the clinic. Got blood work done (CK still at 204), a clinical exam, a very thorough NGL and an EMG, conducted by the head of the clinic, a professor of neurology. Sadly he and his whole clinic is specialised in MS, not ALS... He did my left side, calf, thigh, upper arm, hand, and because I had told him about my fears of bulbar onset, he reluctantly agreed to stick a needle in my tongue. He said this was not standard procedure and I got the distinct feeling he had't done it before. He didn't examine my throat, back, paraspinals,...
Needless to say, it was all clear, but I am still not convinced. I know I sound like the classical hypochondriac, but after being discharged without any findings I started to experience all the things I found about bulbar onset.
I feel my 'S's' don't come easily, it almost sounds like a slight lisp to me, my tongue and jaw feel fatigued while chewing, I feel food residue at the back of my mouth and have to swallow more that once per bite... And yesterday my tongue started to twitch.
It's a twitch on the right side of the tip, it's not continuously, but it's increasingly there whenever I look in the mirror while I have my tongue at rest. I feel like I slowly but mercilessly develop all the symptoms I have been reading about, yet the symptoms are there, the twitching increases, and after having been to four different neuros I just don't know what to think or do any longer. Whether to just ignore my symptoms, and believe this is all benign, or to seek other doctors, because I still doubt the competence of the four I've visited so far.
Sorry for troubling anyone, I know this post is way too long for any sane person to read, furthermore English is not my first language, therefore I apologise for possible mistakes, but I just don't know who to ask for help at this point. My family suffers from my constant anxiety, yet I can't control my fears.
Have the EMGs been done too early? Have they been thorough enough to detect the beginnings of bulbar onset? Why did one neuro tell me I most definitely suffer from MND? Would the professor have detected LMD when needling the 'wrong' side of my tongue two weeks before my tongue twitches started?
Please, if anybody could give me any advice, it would be greatly appreciated.
