Thanks for that xoinnamorata. Your case does sound similar. When my ENT looked with the camera he too said it was dry with mucus at the sides which he said shows the swallowing mechanism might not be working properly. My vocal chords were ok too. I have terribly dry mouth quite often. I don't notice excessive reflux, but occassional. Wish I could eat banans though!
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One thing I forgot to add that probably make my symptoms different to yours is the tongue involvement. I've had an increasingly achy and fatigued tongue (the muscles right at the back of your throat). This had increased this week and today I am barely able to talk. I've had to give up brushing the teeth.
I am more confident based on the valuable feedback from the very helpful people here, and the physical exam by a neuro, that its not ALS, but still very concerned about what it might be, and whats coming next.
I am more confident based on the valuable feedback from the very helpful people here, and the physical exam by a neuro, that its not ALS, but still very concerned about what it might be, and whats coming next.
xoinnamorata
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My tongue feels a bit strange, but I don't feel fatigue or achiness. Most of my symptoms seem to be in my throat, down around the Adam's apple area, like you described. (No Adam's apple here, as I'm female. 
) I can definitely understand what you are saying. It is very reassuring to hear that people here and doctors do not believe it to be ALS or MND, in general, for that matter! But yes! The lack of knowing what it is is VERY difficult. I am very anxious about this all, as well, and the absence of answers tends to make my mind jump to worst case scenario, as anxiety has a nasty habit of doing. I'm sorry that you are unable to eat ANYthing. What happens when you do? And, out of curiosity, what is your age?
) I can definitely understand what you are saying. It is very reassuring to hear that people here and doctors do not believe it to be ALS or MND, in general, for that matter! But yes! The lack of knowing what it is is VERY difficult. I am very anxious about this all, as well, and the absence of answers tends to make my mind jump to worst case scenario, as anxiety has a nasty habit of doing. I'm sorry that you are unable to eat ANYthing. What happens when you do? And, out of curiosity, what is your age?Hi,
Decided that I'm going to pay for an EMG and MRI as the waiting list here for free ones will be quite long. I don't know much about the EMG but I presume it will not only rule out (and not IN we now assume) als, but also may detect what, if any, muscle disease I may have...?
I can then go over the results with either of the neuros (one who specialises in ALS or the one who I've yet to see).
I've been avoiding these tests (the first neuro mentioned them but said they were largely to satisfy me) as I had convinced myself it was ALS and therefore not wanted to face up to it.
I've noticed my tongue is slightly better in the afternoons. It generally feels tense at the back even when not aching, a bit like being in mid yawn. Weird. Also wierd uneven muscular symptoms when swallowing and around my jaw; Lately, weak arms and legs. Mine seems to have moved a little further than the throat, though some of it may be the result of the weight loss ofcourse. I'm in my 40's.
I've not been brave enough to attempt to swallow anything solid since even rice pudding got caught in the throat and made me cough for about 2 hours. The throat just hasn't got the muscular power to get it down. I know that sounds weird, but it feels so obvious to me, even when swallowing liquids.
I don't want to go on about me here when these kind folk have enough to deal with. I'm not sure if its possible to send you a message on this forum but I will let you know the results of the EMG and MRI.
I think you should really be comfortable that your EMG's were fine. For the twitching, try Magnesium (you can get a spray oil). I've noticed taking it reduces twitches somewhat.
Decided that I'm going to pay for an EMG and MRI as the waiting list here for free ones will be quite long. I don't know much about the EMG but I presume it will not only rule out (and not IN we now assume) als, but also may detect what, if any, muscle disease I may have...?
I can then go over the results with either of the neuros (one who specialises in ALS or the one who I've yet to see).
I've been avoiding these tests (the first neuro mentioned them but said they were largely to satisfy me) as I had convinced myself it was ALS and therefore not wanted to face up to it.
I've noticed my tongue is slightly better in the afternoons. It generally feels tense at the back even when not aching, a bit like being in mid yawn. Weird. Also wierd uneven muscular symptoms when swallowing and around my jaw; Lately, weak arms and legs. Mine seems to have moved a little further than the throat, though some of it may be the result of the weight loss ofcourse. I'm in my 40's.
I've not been brave enough to attempt to swallow anything solid since even rice pudding got caught in the throat and made me cough for about 2 hours. The throat just hasn't got the muscular power to get it down. I know that sounds weird, but it feels so obvious to me, even when swallowing liquids.
I don't want to go on about me here when these kind folk have enough to deal with. I'm not sure if its possible to send you a message on this forum but I will let you know the results of the EMG and MRI.
I think you should really be comfortable that your EMG's were fine. For the twitching, try Magnesium (you can get a spray oil). I've noticed taking it reduces twitches somewhat.
Thanks Al - caught me by surprise it did.
As I've said I'm going to book the EMG and MRI scan to rule out (hopefully) several diseases.
My question(s) here are:
Being that my symptoms are primarily in the bulbar region, would these two tests conclusively rule out this condition (ALS/MND bulbar or otherwise)?
The neuro mentioned he would only scan the base of the skull region - would that be enough to check for everything (like MS) do you think? (I'm not trying to second guess him, I'm just trying to get it all done in one go rather than have to do it again.)
If bulbar ALS starts in the throat first, is it the voice which goes along with the swallowing? I've read here that someone with bulbar said their swallowing went first, then their tongue. Thats the order of my symptoms, though my vocal chords seem ok, even if it feels tiring and strange to talk. If the swallowing goes before the tongue, is it liquids that cause the initial problem, or solids?
I am having trouble talking because it feels like my tongue has been in a freezer and this has gradually got worse over weeks. I notice it feels stranger to do that part of the swallow where the back of the tongue pushes up to the roof of the mouth. This is where I'm concerned my swallowing issues are about to move to liquids also.
Please forgive me for coming back with these questions - my partner and I have quite a chat (which is quite tricky at the moment!) and I feel there are some questions where your oppinions would be most gratefully received.
As I've said I'm going to book the EMG and MRI scan to rule out (hopefully) several diseases.
My question(s) here are:
Being that my symptoms are primarily in the bulbar region, would these two tests conclusively rule out this condition (ALS/MND bulbar or otherwise)?
The neuro mentioned he would only scan the base of the skull region - would that be enough to check for everything (like MS) do you think? (I'm not trying to second guess him, I'm just trying to get it all done in one go rather than have to do it again.)
If bulbar ALS starts in the throat first, is it the voice which goes along with the swallowing? I've read here that someone with bulbar said their swallowing went first, then their tongue. Thats the order of my symptoms, though my vocal chords seem ok, even if it feels tiring and strange to talk. If the swallowing goes before the tongue, is it liquids that cause the initial problem, or solids?
I am having trouble talking because it feels like my tongue has been in a freezer and this has gradually got worse over weeks. I notice it feels stranger to do that part of the swallow where the back of the tongue pushes up to the roof of the mouth. This is where I'm concerned my swallowing issues are about to move to liquids also.
Please forgive me for coming back with these questions - my partner and I have quite a chat (which is quite tricky at the moment!) and I feel there are some questions where your oppinions would be most gratefully received.
rose
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Flashter,
I don't think you're understanding the bigger picture here. That picture includes normal clinical exams, and normal test results.
I absolutely do not think your [QUOTE: symptoms are primarily in the bulbar region END QUOTE]. Because you do not show signs that have been observed by your doctors, or by testing, of any bulbar involvement. 'Bulbar' refers to the bulbar region of the brain stem. You have not been found to have anything that points to cranial nerve malfunction at this time.
To keep thinking you have bulbar involvement is as preposterous as a person who has acid reflux, or even strep throat saying they have bulbar issues. Its not how it works. Bulbar is not the area of the body, its in reference to nerves that control the muscles in the face, mouth and throat.
There is no way that we can really know what you're experiencing by talking with you on an internet forum. That is why it is so important that you stop second guessing your doctors, and be willing to listen to what they have to say.
When someone with true bulbar issues has trouble swallowing, especially if it has to do with LMN bulbar, it is purely weakness, plain and simple. Its not how it feels. Difficulty swallowing is due to weakness. If you had weakness, then when you had the swallow study test, the thin liquids that you allowed yourself to be tested with would not have cleared your mouth when you swallowed. There would have been residue in your mouth (which would have been noted) and it would have taken several swallow attempts to clear it.
If your were experiencing UMN bulbar involvement, then, your clinical exam could never have been considered normal.
Honestly, do yourself, your partner, and anyone else that is meaningful to you a big favor, and chill out, LISTEN to what your doctors are telling you.
good luck to you.
I don't think you're understanding the bigger picture here. That picture includes normal clinical exams, and normal test results.
I absolutely do not think your [QUOTE: symptoms are primarily in the bulbar region END QUOTE]. Because you do not show signs that have been observed by your doctors, or by testing, of any bulbar involvement. 'Bulbar' refers to the bulbar region of the brain stem. You have not been found to have anything that points to cranial nerve malfunction at this time.
To keep thinking you have bulbar involvement is as preposterous as a person who has acid reflux, or even strep throat saying they have bulbar issues. Its not how it works. Bulbar is not the area of the body, its in reference to nerves that control the muscles in the face, mouth and throat.
There is no way that we can really know what you're experiencing by talking with you on an internet forum. That is why it is so important that you stop second guessing your doctors, and be willing to listen to what they have to say.
When someone with true bulbar issues has trouble swallowing, especially if it has to do with LMN bulbar, it is purely weakness, plain and simple. Its not how it feels. Difficulty swallowing is due to weakness. If you had weakness, then when you had the swallow study test, the thin liquids that you allowed yourself to be tested with would not have cleared your mouth when you swallowed. There would have been residue in your mouth (which would have been noted) and it would have taken several swallow attempts to clear it.
If your were experiencing UMN bulbar involvement, then, your clinical exam could never have been considered normal.
Honestly, do yourself, your partner, and anyone else that is meaningful to you a big favor, and chill out, LISTEN to what your doctors are telling you.
good luck to you.
rose
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I logged back in to add that yes, an mri of just the brainstem would be ideal to rule out anything 'structural' present there, that should not be. It is a better test than whole head mri to look at issues perceived involving swallowing. If you had to choose between just having mri or emg, I'd definitely go for the mri
Thank you so much Rose. I'm sorry about my ignorance about the term 'bulbar'.
The neuro mentioned doing both the MRI and EMG and I'll ask for both. I suspect the MRI will be first. Ofcourse if one shows something, then the other may not be required, but I'll aim to have both.
I think the typical MS lesions show in upper part of the brain (wish I had the technical term to hand) and some with CFIDS do end up being diagnosed with MS. However, I can see that the brain stem bit is his primary interest, as you say, and where we should be looking. Doing the whole head I guess may lose some detail on the bit that is the main concern also.
Thank you also for making me feel _slightly_ better about my cowardess at the fluoroscopy. At least what I did manage was of some use.
The neuro mentioned doing both the MRI and EMG and I'll ask for both. I suspect the MRI will be first. Ofcourse if one shows something, then the other may not be required, but I'll aim to have both.
I think the typical MS lesions show in upper part of the brain (wish I had the technical term to hand) and some with CFIDS do end up being diagnosed with MS. However, I can see that the brain stem bit is his primary interest, as you say, and where we should be looking. Doing the whole head I guess may lose some detail on the bit that is the main concern also.
Thank you also for making me feel _slightly_ better about my cowardess at the fluoroscopy. At least what I did manage was of some use.
rose
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You are correct that MS lesions would not show up on mri of brain stem. However, if your doctors were considering MS, then, most likely this would have been suggested to you.
I understand how you stumbled across ALS and subsequently became anxious that it could be something in this group of diseases. It happens to many. For some reason, many people who are anxious are able to overlook whatever does not apply, things like a sudden onset of events that trigger their symptoms—such as has happened to you—and they become convinced they have it, even though there is no evidence to substantiate their fears.
However, what I don't really get is why you do not want to follow the logical chain of thought that you have had a worsening of a condition you already have been diagnosed with. What's more, that condition—CFIDS/ME— is known to worsen after stress or illness, and does cause fatigue, weight loss, etc. To me, the weight you have lost is significant, even if you were a person who could stand to lose some. That is about a five pound per month weight loss.
If your mri and other diagnostic testing does not turn up anything new, consider asking for some therapy sessions with either a speech language pathologist, or a speech therapist. They will have resources to help you get past the feeling you cannot eat safely, and get you back to enjoying your life.
I hope you're able to focus on steps to feel better and get your life back on track. Time wasted can't be gotten back.
I understand how you stumbled across ALS and subsequently became anxious that it could be something in this group of diseases. It happens to many. For some reason, many people who are anxious are able to overlook whatever does not apply, things like a sudden onset of events that trigger their symptoms—such as has happened to you—and they become convinced they have it, even though there is no evidence to substantiate their fears.
However, what I don't really get is why you do not want to follow the logical chain of thought that you have had a worsening of a condition you already have been diagnosed with. What's more, that condition—CFIDS/ME— is known to worsen after stress or illness, and does cause fatigue, weight loss, etc. To me, the weight you have lost is significant, even if you were a person who could stand to lose some. That is about a five pound per month weight loss.
If your mri and other diagnostic testing does not turn up anything new, consider asking for some therapy sessions with either a speech language pathologist, or a speech therapist. They will have resources to help you get past the feeling you cannot eat safely, and get you back to enjoying your life.
I hope you're able to focus on steps to feel better and get your life back on track. Time wasted can't be gotten back.
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Hi Rose.
Thank you for your message.
You are being a lot more logical than I sound, and what you are saying about it possibly being my CFIDS is what many have been saying from the beginning.
Ofcourse I'd say that I'm stressed because of my progressing symptoms, but there's a little more to it than that.
The swallowing issue were not as sudden as I may have indicated. Tablets etc started getting caught in the throat occassionally, then the phlegm, then solids became difficult, then the weakness & clicking became more noticeable. My arms/legs then got weaker, and in the last two weeks, talking has become difficult because of the tongue & jaw aching and weakness. I put much of this down to CFIDS and was convinced by a doctor that I didn't need a test or treatment because it was just that. I've already mentioned the other strange symptoms running up to the swallowing.
This has happened over a period of 6-7 months.
Whilst nothing to the level of ALS, I've put up with all sorts of things that would normally get the average person running to the doctor over the years with CFIDS. I'm not sure how to explain it, but I know something is structurely going/gone wrong. Something has happened/is happening to the muscles in the throat, neck and tongue. Its not a passing thing, its every day and getting worse. I can feel it even when I am not swallowing/talking. Its quite possible CFIDS is adding to the mix with the muscle twitches for example.
I was around 10 stone in April I think, so around 8 stone now.
Thanks for the advice about a speech therapist. The support structure for CFIDS in the uk is, in my oppinion and that of many other sufferers, non existent. I have often said I could walk into the doctors office with my arm hanging off and he'd say it was my CFIDS playing up and send me home.
I've just found out that the cost of the MRI (and EMG) is actually very reasonable so thats good news at least.
The MRI may even be tomorrow.
Thank you for your message.
You are being a lot more logical than I sound, and what you are saying about it possibly being my CFIDS is what many have been saying from the beginning.
Ofcourse I'd say that I'm stressed because of my progressing symptoms, but there's a little more to it than that.
The swallowing issue were not as sudden as I may have indicated. Tablets etc started getting caught in the throat occassionally, then the phlegm, then solids became difficult, then the weakness & clicking became more noticeable. My arms/legs then got weaker, and in the last two weeks, talking has become difficult because of the tongue & jaw aching and weakness. I put much of this down to CFIDS and was convinced by a doctor that I didn't need a test or treatment because it was just that. I've already mentioned the other strange symptoms running up to the swallowing.
This has happened over a period of 6-7 months.
Whilst nothing to the level of ALS, I've put up with all sorts of things that would normally get the average person running to the doctor over the years with CFIDS. I'm not sure how to explain it, but I know something is structurely going/gone wrong. Something has happened/is happening to the muscles in the throat, neck and tongue. Its not a passing thing, its every day and getting worse. I can feel it even when I am not swallowing/talking. Its quite possible CFIDS is adding to the mix with the muscle twitches for example.
I was around 10 stone in April I think, so around 8 stone now.
Thanks for the advice about a speech therapist. The support structure for CFIDS in the uk is, in my oppinion and that of many other sufferers, non existent. I have often said I could walk into the doctors office with my arm hanging off and he'd say it was my CFIDS playing up and send me home.
I've just found out that the cost of the MRI (and EMG) is actually very reasonable so thats good news at least.
The MRI may even be tomorrow.
They're trying to organise the MRI today. Lets hope its just my CFIDS playing up. They haven't been able to get hold of the neuro yet so the secretary is booking a scan of the head and cervical spine (no idea what that means?!).
Breathing has been getting more difficult past week. Last night wasn't good. Out of breath when lying on my back in particular. My throat seemed to close up as I was feeling asleep and it would jolt me awake. My throat/tongue seems to be in a permanent yamn like state muscle-wise, and my jaw is 'floppy' for want of a better word.
Breathing has been getting more difficult past week. Last night wasn't good. Out of breath when lying on my back in particular. My throat seemed to close up as I was feeling asleep and it would jolt me awake. My throat/tongue seems to be in a permanent yamn like state muscle-wise, and my jaw is 'floppy' for want of a better word.
olly
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flashter,how have you got a mri so quick? are you going private?
an mri costs around £1,000-£1,500 depending on were you live and what area of the body there doing.
my experience of dysphagia is very different to yours.
mine started about 5yrs ago,just every now and again but has slowly developed to every day and most times i eat.
the muscles involved with chewing are weak,its not just meat or hard foods but even something like bread is hard to chew more than three times.............my diet is mostly liquid and soft foods now.
i have found i can swallow something larger like a piece of bread hardly chewed (i think this is because bigger peices can get pushed down better)rather than something smaller.
smaller peices of food,tablets and things crumbly or rough textured ect get stuck and wont go down without something to move it along.........i find a bit of bread sometimes works.
for me the problem is the area that should open up to let food pass down into the esophagus (sp) though i have choked sometimes when food has passed lower down.
as for liquid i seem to be ok but i can choke unexpectedly on saliva.
rose has made some very good points and knows alot about this,her point about residue hit me because after eating theres ofton bits of food hanging about.
no odd sensations,tongue feels fine just weakness but i dont have als i have umn dysfunction.
ps,i do think your episode last night was down to anxiety and you may want to see your gp and get something to help with this................seriously,a few weeks back i was so distressed with my symptoms they put me on meds to help and even though the symptoms are the same i do feel better and able to cope with them.
an mri costs around £1,000-£1,500 depending on were you live and what area of the body there doing.
my experience of dysphagia is very different to yours.
mine started about 5yrs ago,just every now and again but has slowly developed to every day and most times i eat.
the muscles involved with chewing are weak,its not just meat or hard foods but even something like bread is hard to chew more than three times.............my diet is mostly liquid and soft foods now.
i have found i can swallow something larger like a piece of bread hardly chewed (i think this is because bigger peices can get pushed down better)rather than something smaller.
smaller peices of food,tablets and things crumbly or rough textured ect get stuck and wont go down without something to move it along.........i find a bit of bread sometimes works.
for me the problem is the area that should open up to let food pass down into the esophagus (sp) though i have choked sometimes when food has passed lower down.
as for liquid i seem to be ok but i can choke unexpectedly on saliva.
rose has made some very good points and knows alot about this,her point about residue hit me because after eating theres ofton bits of food hanging about.
no odd sensations,tongue feels fine just weakness but i dont have als i have umn dysfunction.
ps,i do think your episode last night was down to anxiety and you may want to see your gp and get something to help with this................seriously,a few weeks back i was so distressed with my symptoms they put me on meds to help and even though the symptoms are the same i do feel better and able to cope with them.
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Hi Olly,
Thanks for taking the time to respond. Didn't realise there were so many from the UK on this forum.
Yes I am going private and the MRI costs around £400 for head and cervical spine (which I gather is the neck bit down to your shoulders). The EMG is a bit less than that and is next week. The MRI wasn't the same day, but it is this week.
It seems there is a massive range of prices even in my local area (some charge £1200);
Whats more is its an open type scanner so no tube to lie in for ages.
My dysphagia is down to fatigue and weakness I think in that area of my body. Even now, sipping my fortijuice has made the soft palate or back of tongue (can't work out which) ache. Its got worse over months/weeks and appeared some time after the swallowing.
You are probably right about the anxiety. The breathlessness has been building up over days and is much worse at night. It could be the CFIDS, as that can affect breathing. My worry was that I seem to recognise the odd muscular feeling in my diaphragm area as it feels like my throat. The muscles are kind of uncoordinated and crampy. They stay squeezed up when they should relax. My tongue is like that most nights.
I would accept help with the anxiety. However saying you have CFIDS/ME often means, in my experience, the doctors would rather not treat you at all for fear of making you worse.
Hopefully your meds are of the liquid form!
Thanks for taking the time to respond. Didn't realise there were so many from the UK on this forum.
Yes I am going private and the MRI costs around £400 for head and cervical spine (which I gather is the neck bit down to your shoulders). The EMG is a bit less than that and is next week. The MRI wasn't the same day, but it is this week.
It seems there is a massive range of prices even in my local area (some charge £1200);
Whats more is its an open type scanner so no tube to lie in for ages.
My dysphagia is down to fatigue and weakness I think in that area of my body. Even now, sipping my fortijuice has made the soft palate or back of tongue (can't work out which) ache. Its got worse over months/weeks and appeared some time after the swallowing.
You are probably right about the anxiety. The breathlessness has been building up over days and is much worse at night. It could be the CFIDS, as that can affect breathing. My worry was that I seem to recognise the odd muscular feeling in my diaphragm area as it feels like my throat. The muscles are kind of uncoordinated and crampy. They stay squeezed up when they should relax. My tongue is like that most nights.
I would accept help with the anxiety. However saying you have CFIDS/ME often means, in my experience, the doctors would rather not treat you at all for fear of making you worse.
Hopefully your meds are of the liquid form!
olly
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hi flashter,i am nhs so had to wait a few months for my mri's.
i am waiting for an appointment to see an oral surgeon/specialist ,my hospital is at breaking point after shutting a hospital down in a next town so it looks like it will be the new year.
lol,no meds are tablet form and are a pain to get down but i am feeling better in myself now and able to cope better.
a tip for you is to try not to stress about eating,its true that if you get worked up about it it makes the process harder.................i am trying some cognitive therapy recommended were i try not to think about the process of chewing and swallowing being difficult but just get on with it to the best of my ability..........oh the problem is still there but not being distressed does make things easier.
try eating something but dont think about the negatives such as difficulty or distress,if the food does not go down or you cough ect just do what ever you need to do to help it but dont dwell on it or panic.........honestly it does help.
i started as limb onset 12yrs ago and started bulbar symptoms 5yrs ago so slow steady progression for umn desease,my speech problems have been very slow in progressing along with the bulbar symptoms.
hang in there,hopefully you will know more after your tests and its something treatable.
take care,caroline.
i am waiting for an appointment to see an oral surgeon/specialist ,my hospital is at breaking point after shutting a hospital down in a next town so it looks like it will be the new year.
lol,no meds are tablet form and are a pain to get down but i am feeling better in myself now and able to cope better.
a tip for you is to try not to stress about eating,its true that if you get worked up about it it makes the process harder.................i am trying some cognitive therapy recommended were i try not to think about the process of chewing and swallowing being difficult but just get on with it to the best of my ability..........oh the problem is still there but not being distressed does make things easier.
try eating something but dont think about the negatives such as difficulty or distress,if the food does not go down or you cough ect just do what ever you need to do to help it but dont dwell on it or panic.........honestly it does help.
i started as limb onset 12yrs ago and started bulbar symptoms 5yrs ago so slow steady progression for umn desease,my speech problems have been very slow in progressing along with the bulbar symptoms.
hang in there,hopefully you will know more after your tests and its something treatable.
take care,caroline.
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