Please Respond

[Sammantha]

Hi, i posted on the PBP site but noone replied. Ever since i started having mouth symptoms a few months ago i have been spitting while i talk or when i take a drink from a soda can, the soda spills right out the side of my mouth. Down my face and unto my shirt! This has been embarassing but it does not happen all the time. I see my neuro in July, should i bring this up? Do you think it matters.. He already knows that i have tongue twitching and my mouth does not close when i sleep, my fourth EMG was supposed to be done to rule out MND but they did the same exact muscles they did on my third EMG and none on my face or tongue... I know it is weird to complain about not getting needles stuck in your face but i was hoping that EMG would be my last. ( I think that they did not do as many muscles because i had no insurance at the time.) Duke hospital has been so wonderful, i got the bill for the last EMG and it was only 500 dollars... The whole time i had the EMG done i was like, i dont have insurance you know.... This is my last one, i am not doing anymore... I said that in hopes that they would do a more thorough job so i did not have to come back..... Anyways i got off track, should i mention the soda slobbering to the neuro or will it be a waste of breathe? Thanks so much, Sam

ps...Duke does a thorough job no matter what, i just wanted to drive the point home to the tech!

 

[Al]

Hi Sam. You have the same name as one of my granddaughters. Lovely girl as I expect you are. First of all sleeping with your mouth open has nothing to do with anything except how often you have to wash pillow cases. Yes mention the soda slobbering. The good news is that it could be caused by Bell's Palsey or a few other things. Write down a list of things that you notice are wrong for the Neuro. The day before the appointment pick the top 5 that either bother you most or you are most concerned about. If you go in with a dozen signs or symptoms he'll probably start thinking " internet nut" or hypochondriac. Sad to say but it happens.
AL.

 

[CindyM]

Sam- Al gives good advice! My docs are always respectful to me - I guess they don't want to seem to pick on an old lady, LOL- but still one told me that the more things I complain about the more confused he becomes.

Plus one of my other docs listens to my long list and then picks the one or two things she thinks she can do something about. Each time she picked the thing that was most minor to me, so I agree with AL. Go in with 3 to 5 things that YOU are concerned about! :-D

 

[BethU]

This happens to me sometimes (I have bulbar symptoms). It feels like the muscles you use to swallow also sometimes propel liquids the other way, right out of your mouth ... or something like that! I've had fluid spit out all over my keyboard at the computer, and of course, at the table, etc.

I now press a napkin over my mouth when I swallow liquids. I think the problem has something to do with not having a good mouth seal. When I hold a napkin or tissue to my mouth, I know I won't spit out, and I seem to be able to swallow more easily. Of course, the napkin gets wet with each swallow, so I keep a stack of napkins and tissues by me.

I have had progressively worsening bulbar symptoms for 2 1/2 years and still can't get into a treatment program, so I'll be very interested in what you learn from your neuro. Please let us know what he/she says about this problem.

(After a variety of diagnosed and hints from 2 neuros that "it could be ALS" ... and 1 neuro who said "it couldn't possibly be ALS" ... I was finally diagnosed with ALS after an EMG on 5/5. I've gotten the proper referral to a big university program here, gotten MDA approval to pay for treatment there, etc., etc., but every time I call for an appointment, I am told to call back in 2 days, as they are "still reviewing my paperwork." Meanwhile, I am starting to get very short of breath ... a new symptom ... and completely exhausted, also a new symptom. I figure I'll be dead before I get into a treatment program, which at this point is OK too. I'm really tired of fighting the system. But it is very good to read the advice about having only 4 or 5 symptoms to talk about ... in case I ever get to see a neuro again, I will do that. My "symptoms list" currently runs 2 pages from the beginning of my slurred speech in March 2006.)

I am so grateful to this forum for giving me some answers and insights to these wierd things that keep happening ... Just when I begin to think I'm completely nuts, I read that someone else has had the same problem. I may be sick, but at least, I know I'm not *completely* nuts! At least, not yet.
Beth

 

[BethU]

Rereading your message, I think we have different symptoms! Sorry if my answer was off track. Good luck with finding an answer ...
Beth

 

[crystalkk]

Sam,

I would definately mention the new symptoms. He already has a list of the old ones, and is probably looking for new ones they want to see the progression for themselves.

 

[Sammantha]

Thank you

Thanks, AL, Cindy, and Beth........ Al you are right, i actually hold back at the doctor's because i do not want to come across as a hypochondriac. When i first was having stiffness and spasms on my left side it was occurring during a time that i kept getting very ill, strep, bronchitis, sinuses etc.. I could not shake them. My doctor thought i had a neuralgie due to chronic mono as the mono virus i got when i was twelve reactivated and cause lymphadenopathy. Then after observation of my body my surgeon said i had muscle wasting. That was the very first time i heard of that. He was sure i had Vasculitis as i was sick all the time also. He referred to me to the best doc at Duke for it. I went to Chapel Hill first because Duke could not see me for three months. Anyways after many blood test Rheumatology and Immunology started doing other tests related to neurology, they then referred me to neurology and that is how i started on that track. MS was ruled out and i was very shocked because by now i had started researching my signs and symptoms. Literally every other thing it could be was checked, lyme, MS, lead mercury toxicity, amyloid, calcium, immunological and even leukemia. The only thing left was ALS..... Which i still did not think i had until i was referred to neuromuscular division after first EMG. Now that i have had abnormal and normal EMG's my neurolgist takes all my signs with a grain of salt, like the development of brisk reflexes, the foot and wrist drop. I was led into neurology by the doctors and not by anything i complained about. Now that i am here they dont want me and they certainly do not want to know about any problems i am having.... They dont say that but i can tell, i am so young and i am a mother. I am like you Beth, i dont have any fight left in me, i gave it to God a long time ago.... My GP says i have a neuromuscular disorder and my neurologist says that i have so many other illness's going on that it is confusing.... Meanwhile i am still getting no help...... The only help i get is from this website......... I never claim to have ALS and nor do i want to, but i cant help that i am having all these signs and symptoms and i rather discuss them here then with my doc... The level of professionalism i am at right now with the whole neurology thing, the docs do not take in account anything you say really, they just want the facts, the tests and what they see.... My neuro did not take the mouth thing seriously until i started developing recurring thrush from chronic dry mouth. My Gp is like, tell him i did another Aids test and i did another immunoglobin test and they are negative! I am so tired of being tested and proving things i dont want to be proven really. This is why i come here looking for answers and validation... I am not looking to be told i have ALS, i just cant help that my experiences are similar and it is nice to talk to people that are going through the same things rather they have ALS or not. When and if my neurologist says, NO you cant possibly have ALS or MND i will let everyone know..... We will celebrate and ya'all can refer me as the girl who chimes in about problems even though she has no business being here!

ps... can you tell i have anxiety about being considered a hypohchondriac!? I have to get advice about a simple question before i bring it up to my doc.... I have never been called or labeled a hypochondriac but if it were not for the progression and some tests then that is all that they could say.... The nuerolgist says, You definetly have medical issues going on, we just dont know what is causing them. I would be happy to leave it at that and just talk on this forum.......because ultimately there is nothing they can do for ALS or myself, because if they could it would have been done a long time ago.

Al, i bet you are the best Grandpa in the world, the way you give advice and take care of so many on here......

 

[olly]

sammantha

i can totally relate to what you are going through and my heart goes out to you.
9yrs ago now i got ill,started with muscle spasms,weakness in my left lower leg,left foot drop and hyperreflexia. i have had serial mri's,genetic testing as well as all the usual blood tests. ms was suspected as well as a number of other neurological deseases but the mri's kept coming back ok the last one being 2yrs ago. so ruling everything out my neuro said it is a mnd probably pls. my neuro has followed my progression from the start and knows something is wrong but says sometimes no definate diagnosed can be given untill autopsy as so many neurological illnesses share similar symptoms and mri's/tests dont always show things up. you need to find one good neuro to follow your progression and stick to them as i have found different neuros can interprate signs/symptoms differently. al is right about what symptoms to tell your neuro, i too thought every little symptom was related but it confused my neuro a bit and was told by my neuro rehab doctor that you can't blame everything as being neurological, there can be other things going on as well and these need to be ruled out as seperate from the neuro stuff. finally, i developed slight swollowing problems approx 18mths ago and early this year jaw/chewing problems. i too dribble from the right side of my mouth sometimes when i drink and i am having problems now choking on saliva that trickles to the back of my throat and find i need to keep swollowing all the time. when i talk i have to keep stopping to swollow or i dribble, not lady like.
hang in there and we are all here for you.....you too beth.
take good care
caroline

 

[rose]

I am so tired of being tested and proving things i dont want to be proven really. This is why i come here looking for answers and validation... I am not looking to be told i have ALS, i just cant help that my experiences are similar and it is nice to talk to people that are going through the same things rather they have ALS or not. When and if my neurologist says, NO you cant possibly have ALS or MND i will let everyone know..... We will celebrate and ya'all can refer me as the girl who chimes in about problems even though she has no business being here!

ps... can you tell i have anxiety about being considered a hypohchondriac!?

Al, i bet you are the best Grandpa in the world, the way you give advice and take care of so many on here......

Sam, I just wanted to say that you don't come across as a hypochondriac in the least. As you've just said, what you're experiencing are symptoms that go with motor neuron disease, and it is so very hard to cope with not knowing what it is that is making us sick. I think you have a very good attitude about your situation. ... I went over to the PBP site and found your other post... ~ I wish that forum was more active, as I'm mostly bulbar.~ ... and lo and behold, after reading it, I discovered I can no longer whistle either! At all. ~ didn't know, and I could always whistle better than I could sing, ( sigh) I had the twitches around the nose like you described, but it only ever happened a few times. ... Do you think that your mouth is open during sleep because of soft palate issues, or due to weak jaw? and, regardless of what your diagnosis will be, as soon as you're able to acquire health insurance, or can find a way before this, I think you should have the modified swallow test done. Those speech pathologists that do the test with you are very knowledgeable, and might be able to see something your other doctors have missed. I know in my case they were finding problems that I was not aware I had, which of course is not good, but it shows how much they can tell just by examination and watching the x-ray process. Even though you're tired of being tested, its like a jig saw puzzle, keep getting enough pieces to fit, and then there will be a picture, which is important because you might very well have a treatable condition if it could only be pinpointed.... If you've been on antibiotics that could contribute to your problems with the thrush. Even though there wasn't an autoimmune reason found for you, usually people that get thrush do have some sort of immune problem. Its just so frustrating even for me, to read what you're going through. You're at an excellent medical facility, and like you stated, it wasn't you telling them you had muscle wasting, etc, but the reverse, they found what you weren't aware of at first. You hang in there! ( (hugs))

 

[Sammantha]

Hi Rose

Thank you so much for your post..... I almost cried! I have not been on antibiotics since September.... It is true that they can cause it, the first time i got it my docs thought it was because of being on antibiotics for so long. That was a year ago. Now that my mouth is always open when i sleep it happens over and over.... It is not bad like what you would see on the internet. My doc prescribes Duke's Magic Mouthwash.... Never in my whole life i have i had it, not even when i was a baby.... You know what is funny about whatever i have? My left side has way more stiffness and cramping! I always complained about my left side and my right side has more noticeable symptoms on certain parts of my body. My ENT thought i had TMJ because my jaw and sinuses would ache so bad. My jaw area near my ear gets rock hard and i constantly rub it, the left side of my face and nose feel so tight, like someone is giving me half a face lift. My right side started in about six months ago and now finally is catching up with my left. The weird part is, the right rarely ever causes stiffness or pain. I know that the top of my throat does not lift up like it should, thanks to many sore throats and laryngitis i found that out through my doctor. When i have to chew hard things my jaw gets stiff and tired and i end up eating half my food. When my lips started twitching i really freaked because for over a year i have had all the above symptoms with no twitching. I have realized that once i get cramps i get twitches then i get a noticable chang in my muscle, well my face cramped and it slimmed way down but once the twitches hit, i knew. The funny thing is my face looks so much prettier now that it is skinnier! I try to remember that when my face is sore and hurts, i think i am getting a mini face workout! I looked funny when my right side was not affected yet! When i have to lay my head on those hard MRI machines it feels like my skull bones are going to come right through my skin! I do not know how boney people go through life, i have been muscular and thick most of my life...... You could never see a vein or bone, now my elbows, hands, hips, knees, RIBS, and even my head bones stick out and cause serious pain when they have pressure on them! My best friend was very boney and now i feel bad for not realizing how fragile she was! Believe me, fat and skin does not protect the bones! Thank you for your advice and support.. Sam

 

[rose]

Thank you so much for your post..... I almost cried! I have not been on antibiotics since September.... It is true that they can cause it, the first time i got it my docs thought it was because of being on antibiotics for so long. That was a year ago. Now that my mouth is always open when i sleep it happens over and over.... It is not bad like what you would see on the internet. My doc prescribes Duke's Magic Mouthwash.... Never in my whole life i have i had it, not even when i was a baby.... You know what is funny about whatever i have? My left side has way more stiffness and cramping! I always complained about my left side and my right side has more noticeable symptoms on certain parts of my body. My ENT thought i had TMJ because my jaw and sinuses would ache so bad. My jaw area near my ear gets rock hard and i constantly rub it, the left side of my face and nose feel so tight, like someone is giving me half a face lift. My right side started in about six months ago and now finally is catching up with my left. The weird part is, the right rarely ever causes stiffness or pain. I know that the top of my throat does not lift up like it should, thanks to many sore throats and laryngitis i found that out through my doctor. When i have to chew hard things my jaw gets stiff and tired and i end up eating half my food. When my lips started twitching i really freaked because for over a year i have had all the above symptoms with no twitching. I have realized that once i get cramps i get twitches then i get a noticable chang in my muscle, well my face cramped and it slimmed way down but once the twitches hit, i knew. The funny thing is my face looks so much prettier now that it is skinnier! I try to remember that when my face is sore and hurts, i think i am getting a mini face workout! I looked funny when my right side was not affected yet! When i have to lay my head on those hard MRI machines it feels like my skull bones are going to come right through my skin! I do not know how boney people go through life, i have been muscular and thick most of my life...... You could never see a vein or bone, now my elbows, hands, hips, knees, RIBS, and even my head bones stick out and cause serious pain when they have pressure on them! My best friend was very boney and now i feel bad for not realizing how fragile she was! Believe me, fat and skin does not protect the bones! Thank you for your advice and support.. Sam

You're welcome sweetie, I just wonder about the thrush in relation to your mouth being open and tongue dry. This is because thrush usually thrives in moist areas not too dry. Is the skin on the surface of your tongue cracked? I truly hope you can get a modified swallow test done. I think it would give you and your doctors so much more information to go on.... I think you should bring up hard surfaces feeling uncomfortable to your skull etc, too. Even if you're losing weight, I'm not so sure that your skull would have had more fat padding on it earlier, it could be another clue! take care!