Scared of ALS symptoms, awaiting a neuro appointment
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worried2014
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Thank you for your response Greg. I did see that my ALT was double the high end range, and is my main cause of concern. I know that ALT is predominantly renal, but it is also found in muscles so wondered if that may be related to other symptoms. Ive been doing some research since my post and apparently there are two types of ALT enzyme, one is predominantly renal and the other is muscles, but my results don't distinguish between the two. Have got a GP apt for Wednesday.
Mediasmart
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This thread is like a magnet for wierd.
Worried,
I do not have an ALS diagnosis currently, although I do have some symptoms that have caused me to come here lately. I am waiting patiently as my neuro works towards a diagnosis. I know that it isnt easy, but that's all that you can do for now too.
This being said, I was diagnosed with Lyme disease and a coinfection caled Babesiosis about two years ago and my symptoms were initially almost exactly like yours. Stiff neck and strange pain and symptoms that move from one place to another are hallmarks of Lyme. Also, the eye twitch and light sensitivity are possible with lyme. My light sensitivity in my right eye got so bad for a while that I couldnt go outside without wearing sunglasses. As lyme progresses, it can go to the brain causing difficulties with thinking clearly and with finding words as you described. I had this problem also.
As for your uneven pupils, it may not be a problem at all, and definitely has nothing to do with ALS. There is a condition called physiologic aniscoria in which the pupils are different sizes for no particular reason. It is completely benign in this case, though uneven pupils can be symptoms of other things (not ALS).
Lyme disease is incredibly difficult to detect and requires significantly more than the standard 10 days of antibiotics to treat. If your neuro comes up blank, I suggest that you contact ILADS (International Lyme and Associated Diseases Society) and find a lyme literate doc in your area to explore the possibility.
After 1.5 years of antibiotic treatment, I am finally mostly better. I do have new onset of fasciculations and weakness that is concerning to me, but I am doing my best to leave the PALS and CALS here alone for now. Your symptoms sound nothing like ALS. Best of luck to you in finding whatever ails you.
Limeguy
I do not have an ALS diagnosis currently, although I do have some symptoms that have caused me to come here lately. I am waiting patiently as my neuro works towards a diagnosis. I know that it isnt easy, but that's all that you can do for now too.
This being said, I was diagnosed with Lyme disease and a coinfection caled Babesiosis about two years ago and my symptoms were initially almost exactly like yours. Stiff neck and strange pain and symptoms that move from one place to another are hallmarks of Lyme. Also, the eye twitch and light sensitivity are possible with lyme. My light sensitivity in my right eye got so bad for a while that I couldnt go outside without wearing sunglasses. As lyme progresses, it can go to the brain causing difficulties with thinking clearly and with finding words as you described. I had this problem also.
As for your uneven pupils, it may not be a problem at all, and definitely has nothing to do with ALS. There is a condition called physiologic aniscoria in which the pupils are different sizes for no particular reason. It is completely benign in this case, though uneven pupils can be symptoms of other things (not ALS).
Lyme disease is incredibly difficult to detect and requires significantly more than the standard 10 days of antibiotics to treat. If your neuro comes up blank, I suggest that you contact ILADS (International Lyme and Associated Diseases Society) and find a lyme literate doc in your area to explore the possibility.
After 1.5 years of antibiotic treatment, I am finally mostly better. I do have new onset of fasciculations and weakness that is concerning to me, but I am doing my best to leave the PALS and CALS here alone for now. Your symptoms sound nothing like ALS. Best of luck to you in finding whatever ails you.
Limeguy
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I will just say that so called Lyme literate practitioners are controversial and some people report being given false hope and sustaining damage from high dose antibiotics. Due diligence is indicated
affected
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Ditto that!
worried2014
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Many thanks for your message Limeguy, I appreciate you taking the time to write such a lengthy response.
My symptoms seem to be quite varied and don't seem to match any one thing in particular, accordingly to my numerous, unhealthy, internet searches. Some of the symptoms have gone, whilst others remain and new ones appear! The only constants that I have are twitching, predominantly located to my left eye and the three areas in which there is definite, progressive atrophy ( left foot, calf and left hand, confirmed by GP ) and perceived weakness of right bicep/shoulder, along with the unequal pupil and variance in light perception between the two eyes.
I know that unequal pupils can be aniscora and benign, however the optician has advised me that its usually only benign if you are born with it, if it suddenly appears later in life its often a sign of an underlying problem. And I haven't had it for 35 years. But I do agree that it doesn't seem to be related to ALS/MND at all. I`m hoping that the abnormal blood results also point to something away from ALS, and if it points towards Lyme I take your advice on board.
I have come to the conclusion that I could have anything from 1 of 10000 things, or even more than one thing at the same time. However I am clearly not going to get a diagnosis in the short term, so will leave it to the professionals to do their job and hopefully get things moving in the right direction. My brain MRI is on Saturday, and Neuro appointment is next Thursday, so after then I may have a slightly better idea of what`s happening, or at least will have some things ruled out. Obviously I`m praying that everything is anxiety driven! Whatever the case I will update accordingly. I of course hope that you get a positive outcome at the end of your diagnosis stage.
Nikki, thank you for your comments as well. From what I have read on this forum due diligence is very appropriate when establishing the best course of action to go with should a second opinion become necessary, to either confirm or rule anything out.
Mediasmart and affected; Sorry, obviously that wasn't my intention at all. If I have caused offence to you, or anyone else, I apologise. I hope that it turns out that my issues have nothing to do with ALS/MND, and that this thread just becomes a reference to other DIHALS in that no matter what crazy symptoms you have, it doesn't mean that you have ALS!
Thanks
Mike
My symptoms seem to be quite varied and don't seem to match any one thing in particular, accordingly to my numerous, unhealthy, internet searches. Some of the symptoms have gone, whilst others remain and new ones appear! The only constants that I have are twitching, predominantly located to my left eye and the three areas in which there is definite, progressive atrophy ( left foot, calf and left hand, confirmed by GP ) and perceived weakness of right bicep/shoulder, along with the unequal pupil and variance in light perception between the two eyes.
I know that unequal pupils can be aniscora and benign, however the optician has advised me that its usually only benign if you are born with it, if it suddenly appears later in life its often a sign of an underlying problem. And I haven't had it for 35 years. But I do agree that it doesn't seem to be related to ALS/MND at all. I`m hoping that the abnormal blood results also point to something away from ALS, and if it points towards Lyme I take your advice on board.
I have come to the conclusion that I could have anything from 1 of 10000 things, or even more than one thing at the same time. However I am clearly not going to get a diagnosis in the short term, so will leave it to the professionals to do their job and hopefully get things moving in the right direction. My brain MRI is on Saturday, and Neuro appointment is next Thursday, so after then I may have a slightly better idea of what`s happening, or at least will have some things ruled out. Obviously I`m praying that everything is anxiety driven! Whatever the case I will update accordingly. I of course hope that you get a positive outcome at the end of your diagnosis stage.
Nikki, thank you for your comments as well. From what I have read on this forum due diligence is very appropriate when establishing the best course of action to go with should a second opinion become necessary, to either confirm or rule anything out.
Mediasmart and affected; Sorry, obviously that wasn't my intention at all. If I have caused offence to you, or anyone else, I apologise. I hope that it turns out that my issues have nothing to do with ALS/MND, and that this thread just becomes a reference to other DIHALS in that no matter what crazy symptoms you have, it doesn't mean that you have ALS!
Thanks
Mike
worried2014
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I saw the neuro today, MRI results came back clear.
Neuro undertook physical exam, found brisk reflexes and some fasics, but confirmed no clinical weakness. Has referred me for an EMG, should be within a few weeks, but he does not think that the results will indicate MND, which is obviously very positive! However I will say that he gave information during the consultation that conflicted with most of what the members on here state, along with my own research, and his physical exam wasn't that thorough, so I definitley agree that it seems as though normal neurologists are not particularly well informed regarding MND, and that a specialist neuromuscular consultant is the way to go should things start to point in that direction!
In addition he thinks that my unequal pupils are caused by migraines, which apparently don't always present in headaches, which I did not know.
Finally my results from follow up blood tests came back, still below normal levels for Calcium, and VIt D which wasn't included in original test is also lower than normal. Been prescribed tablets for both, collect tomorrow. ALT reduced from 107 to 89, but still higher than top end normal level of 55. Awaiting appointment date with GP to go through.
Hopefully the above points away from my original fear, and that the EMG will confirm this!
Neuro undertook physical exam, found brisk reflexes and some fasics, but confirmed no clinical weakness. Has referred me for an EMG, should be within a few weeks, but he does not think that the results will indicate MND, which is obviously very positive! However I will say that he gave information during the consultation that conflicted with most of what the members on here state, along with my own research, and his physical exam wasn't that thorough, so I definitley agree that it seems as though normal neurologists are not particularly well informed regarding MND, and that a specialist neuromuscular consultant is the way to go should things start to point in that direction!
In addition he thinks that my unequal pupils are caused by migraines, which apparently don't always present in headaches, which I did not know.
Finally my results from follow up blood tests came back, still below normal levels for Calcium, and VIt D which wasn't included in original test is also lower than normal. Been prescribed tablets for both, collect tomorrow. ALT reduced from 107 to 89, but still higher than top end normal level of 55. Awaiting appointment date with GP to go through.
Hopefully the above points away from my original fear, and that the EMG will confirm this!
Hi worried2014,
Good news and i hope everything goes well for you...
You haven't mentioned if your neuro checked and identified any atrophy.
Left hand grip is normal to be less strong in right hand dominant people so since the fascics are present to many stressed people the only "real" symptom would have been the atrophy.
Also if brisk reflexes were symmetrical then thats still an indication of stressed people.
Finally - since i had also been into similar process with EMGs 15 months ago when everything started (and gladly until now i am clear) and since we are quite similar at age please get an advice based on my experience. You must ask the EMG neuro to check both arms, legs and back muscles. At least 4 or 5 per arm and leg.
In addition he must check the muscles that you are claiming that have atrophied. If the diagram is full then there is nothing to worry.
English is not my mother language so i hope i could explain what i wanted to say properly
worried2014
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Thank you for taking the time to post Panos, especially since English is not your first language! The translation was great by the way!
1) Physiological exam was poor. Conducted minimal upper limb strength tests, zero lower limb strength test. Checked face of hands but not reverse, didn't check inside mouth etc until prompting, no Hoffman check etc etc
2) Advised that there wasn't any point in checking the areas of my potential atrophy as "he had nothing historical to compare them against"
3) Gave incorrect info during the visual exam, for example " it cant be MND as there would be numerous widespread fasics, not just localised, even in the early stages"
I think he had already made his mind up that I had anxiety before I entered the room, probably due to my GPs letter to him which detailed range of symptoms going back a year. He could of course be correct as a lot of the symptoms are not neuro-muscular related, but they could just as easily be separate issues. He only seemed to have a change of heart after testing my reflexes, this is what prompted him to advise that he would refer me for an EMG
I would have raised a complaint regarding the exam if he hadn't referred me for an EMG, as this would have been the result if he had found any atrophy/weakness. If the EMG comes back normal then he was obviously correct in his pre-exam assessment ( and I will see a counsellor! ), but if the EMG is abnormal then I will be making a complaint regarding his initial examination.
He didn't go into much detail regarding my reflexes, but I noticed that they seemed to be brisk on both sides of lower limbs, but more exaggerated on the left side. That being said 5 years ago I had an ACL reconstruction on that knee; I`m not sure if this could influence the results. He did a Babinski test but did not share the findings with me, and I couldn't see/sense the result. I didn't notice any brisk reactions in the minimal tests he did in the upper regions, but to be honest I wouldn't know what to look for, and he didn't comment either way on individual regions. Just said at the end of the exam, "you have brisk reflexes, I think its best to send you for an EMG".
Grip test was weaker in left hand but in the past the left thumb has been broken numerous times and has undergone an operation, again this may influence its strength. I am not sure about whether there is "new! atrophy as I wasn't checking the hand until the index finger started twitching! It is however smaller than the same area on my right hand.
Regarding your comment about the need for multiple EMG tests in different muscles within the same area; my understanding is that an EMG would pick up any abnormalities between the insertion points?!
Did they conduct a bulbar EMG on you?
Great news that your EMGs are currently clear! But after 15 months surely this means that you are ok, or are you still awaiting investigation/diagnosis?
1) Physiological exam was poor. Conducted minimal upper limb strength tests, zero lower limb strength test. Checked face of hands but not reverse, didn't check inside mouth etc until prompting, no Hoffman check etc etc
2) Advised that there wasn't any point in checking the areas of my potential atrophy as "he had nothing historical to compare them against"
3) Gave incorrect info during the visual exam, for example " it cant be MND as there would be numerous widespread fasics, not just localised, even in the early stages"
I think he had already made his mind up that I had anxiety before I entered the room, probably due to my GPs letter to him which detailed range of symptoms going back a year. He could of course be correct as a lot of the symptoms are not neuro-muscular related, but they could just as easily be separate issues. He only seemed to have a change of heart after testing my reflexes, this is what prompted him to advise that he would refer me for an EMG
I would have raised a complaint regarding the exam if he hadn't referred me for an EMG, as this would have been the result if he had found any atrophy/weakness. If the EMG comes back normal then he was obviously correct in his pre-exam assessment ( and I will see a counsellor! ), but if the EMG is abnormal then I will be making a complaint regarding his initial examination.
He didn't go into much detail regarding my reflexes, but I noticed that they seemed to be brisk on both sides of lower limbs, but more exaggerated on the left side. That being said 5 years ago I had an ACL reconstruction on that knee; I`m not sure if this could influence the results. He did a Babinski test but did not share the findings with me, and I couldn't see/sense the result. I didn't notice any brisk reactions in the minimal tests he did in the upper regions, but to be honest I wouldn't know what to look for, and he didn't comment either way on individual regions. Just said at the end of the exam, "you have brisk reflexes, I think its best to send you for an EMG".
Grip test was weaker in left hand but in the past the left thumb has been broken numerous times and has undergone an operation, again this may influence its strength. I am not sure about whether there is "new! atrophy as I wasn't checking the hand until the index finger started twitching! It is however smaller than the same area on my right hand.
Regarding your comment about the need for multiple EMG tests in different muscles within the same area; my understanding is that an EMG would pick up any abnormalities between the insertion points?!
Did they conduct a bulbar EMG on you?
Great news that your EMGs are currently clear! But after 15 months surely this means that you are ok, or are you still awaiting investigation/diagnosis?
Hi,
What i tried to say about the EMG is that you should demand that they check 4-5 muscles in each of your limbs plus paraspinals.
Its very important to clear everything in your head and don't have unanswered questions after the initial EMG because this will create further stress which will create further symptoms. Thats why you must insist that the EMG is a detailed one and performed by a very high qualified professional.
With regards to your areas of atrophy... It seems that you had operation in those areas so i guess that an atrophy would make sense. The same with your reflexes in the left leg.
My story started 15 months ago. I had several EMGs (bulbar too) due to twitching in parts of my body. I am sure if you check my earlier posts you will realize my stress and the fear i have been through. I still have random twitching and actually over the past month my right eye twitches quite a lot and i am now trying to control my fear after all those clear tests and neuro visits. It's not easy. I am still on benzos and i am checking every day my strength and if something has changed in my body. My biggest concern and fear is that maybe this twitching and neurological symptoms are some kind of pre-symptomatic period that could lead to an MND.
That's why i suggest that you clear in detail everything the soonest possible and don't go away with unanswered questions (like the babinski reflex etc.). There are many if(s) and but(s) and since you chose to search online then don't leave the doctor without having all the answers to your questions. Make notes and ask everything!
All the best
What i tried to say about the EMG is that you should demand that they check 4-5 muscles in each of your limbs plus paraspinals.
Its very important to clear everything in your head and don't have unanswered questions after the initial EMG because this will create further stress which will create further symptoms. Thats why you must insist that the EMG is a detailed one and performed by a very high qualified professional.
With regards to your areas of atrophy... It seems that you had operation in those areas so i guess that an atrophy would make sense. The same with your reflexes in the left leg.
My story started 15 months ago. I had several EMGs (bulbar too) due to twitching in parts of my body. I am sure if you check my earlier posts you will realize my stress and the fear i have been through. I still have random twitching and actually over the past month my right eye twitches quite a lot and i am now trying to control my fear after all those clear tests and neuro visits. It's not easy. I am still on benzos and i am checking every day my strength and if something has changed in my body. My biggest concern and fear is that maybe this twitching and neurological symptoms are some kind of pre-symptomatic period that could lead to an MND.
That's why i suggest that you clear in detail everything the soonest possible and don't go away with unanswered questions (like the babinski reflex etc.). There are many if(s) and but(s) and since you chose to search online then don't leave the doctor without having all the answers to your questions. Make notes and ask everything!
All the best
worried2014
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Thanks for the helpful advice Panos, I certainly learned during my first neuro appointment that it is easy to get a little overwhelmed and forget to ask/clarify certain questions/points, a mistake I wont make again.
I have read your previous posts and I understand your anxiety completely, I have been driving myself crazy with worry and yet it is highly likely that this worry has only made my, and your, symptoms worse!
I am now going to "go dark" from this website ( hopefully! ) until after the EMG, whenever that is. I need to stop worrying about something which at the moment, I haven't got. Once Ive had the EMG I will update this thread, hopefully with a positive note!
I have read your previous posts and I understand your anxiety completely, I have been driving myself crazy with worry and yet it is highly likely that this worry has only made my, and your, symptoms worse!
I am now going to "go dark" from this website ( hopefully! ) until after the EMG, whenever that is. I need to stop worrying about something which at the moment, I haven't got. Once Ive had the EMG I will update this thread, hopefully with a positive note!
worried2014
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Hello, I`ve tried to avoid this website whilst awaiting my EMG appointment, but so far I haven't even received a date. I don't want to discuss my (perceived) progressing symptoms in anyway, but I have a couple of questions:
Can bulbar onset present with minor body wide symptoms, ( twitching, cramps etc ) prior to more pronounced bulbar symptoms becoming apparent, or at least noticed?
And for any UK based people who have gone through diagnosis via the NHS; I have got in touch with my neuro`s secretary and asked her if the neuro`s referral includes a bulbar EMG. She said that she spoke to him and he has advised that the EMG technician will decide what areas to test based upon the notes made by him during my initial examination. Some tongue issues were discussed during the appointment but my main issues at that time were limb based, so I am not sure how much "bulbar" symptoms would have been documented. Does this sound correct, and has anyone ever made a successful request to the person undertaking the EMG to test areas that may not have been documented?
Thanking you in advance
Can bulbar onset present with minor body wide symptoms, ( twitching, cramps etc ) prior to more pronounced bulbar symptoms becoming apparent, or at least noticed?
And for any UK based people who have gone through diagnosis via the NHS; I have got in touch with my neuro`s secretary and asked her if the neuro`s referral includes a bulbar EMG. She said that she spoke to him and he has advised that the EMG technician will decide what areas to test based upon the notes made by him during my initial examination. Some tongue issues were discussed during the appointment but my main issues at that time were limb based, so I am not sure how much "bulbar" symptoms would have been documented. Does this sound correct, and has anyone ever made a successful request to the person undertaking the EMG to test areas that may not have been documented?
Thanking you in advance
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