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rose

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What a wonderful group of people! I've been reading off and on all day. ... and (of course) I have questions. This is going to be long, and I apologize in advance, but I want to try to get it all in. Did anyone start with a hoarse voice as their first hint that something was wrong? ~ Actually for me it was a voice problem and a weird sensation in my chest/lungs area, especially after exercise and/or my head tilted forward. This was the autumn of 2006. At first I was treated for asthma (because of the breathing sensation) and for reflux due to the voice issues. But neither helped. The voice problems continued to progress more, but this was just the quality and ability to project, not forming the words themselves. I also have periods of extreme fatigue. I'm a flight attendant, and thought I was just jet lagged, and came back to domestic flying instead of overseas trips, but it didn't help. Eventually - many doctors later - I saw a vocal cord specialist that found that both vocal cords were bowed and partially paralyzed. She and a neurologist performed an EMG on my vocal cord muscles and there was damage to all of the muscles/nerves involved, but I do not know the specifics. I then underwent a procedure where the ENT doc injected my vocal cords with a plumping filler, similar to the product used for cosmetic purposes on our wrinkles. She did succeed in bringing my vocal cords closer together, but my voice did not improve. During this same time frame I was in the care of a rheumatologist, as I'd already had a pre-existing autoimmune condition and it seemed the only route as no other doctor could come up with anything. All of my bloodwork was negative for antibodies (Lupus, Sjogrens, Rheumatoid Arthritis, Myasthenia, Lyme disease) , however, I'd had Reynaud's for many years, and it was believed that I had Sjogren's (which is a condition where the excretory glands become inflamed and stop working) I'd had "dry eye" for a number of years (you know those Restasis commercials on TV where they say "certain" dry eye ~ well they're talking about the inflammatory nature of Sjogren's) ~ and I had dry mouth. My rheumatologist reasoned that even though I did not have dry nose, or other "regions" that it could still be the Sjogren's infiltrating my nervous system, and it explained the fatigue. I took Plaquenil, and Prednisone in varying strengths from the spring of 2007 until January of this year. In November, Methotrexate was added. Nothing helped, other than with the tiredness. In November (2007) my tongue started with the tremor, the edges quiver when I stick it out, and sometimes I can feel it "vibrating" especially underneath when I lay down at night etc; When I stick it out, it goes to the right. The edges are scalloped. In fact, this is how I found this forum, was I googling scalloped tongue and this forum popped up. My tongue has changed in appearance the last couple of months. I've begun having problems chewing, but only sometimes, and swallowing, but only occasionally. My cheeks get achy like when we laugh or smile really a lot. There is a twitch that comes an goes off and on all day (and night I guess) in my right cheek/jaw now. It is easily seen, its like something is moving under my skin back and forth. But its not constant, its on and off. I was sent to a renowned rheumatologist by the neurologist (who had also been betting on it being Sjogren's causing the problem rather than, say, Myasthenia)....I went the beginning of this January. This rheumatologist did not feel that I had sufficient dryness/damage to my body ~ that the Sjogren's was not severe enough to warrant the assumption that it had gone into my nervous system. As autoimmune conditions are inflammatory in nature he felt that if I were put on an even higher dose of prednisone (60 mg daily) for two weeks, that something should improve if it were indeed autoimmune, regardless of the name attached. Nothing did. My vocal cord doctor found after this latest tactic that I had damage to the soft palate as well, and at this point, and I began sporadic trouble breathing at night, and often am wakened with horrible headaches in the early morning hours. The doctor feels it is from lack of oxygen/co2 buildup, and I was supposed to go to a sleep clinic, but haven't done it yet.... sometimes I'm awake enough when it happens, its like a curtain just closing on a stage. Its like something drops down all at once in the back of my throat, and it wakes me up. Other times I become aware gradually in my sleep, I can feel that thing that hangs down in the back of the throat dragging against my tongue when I breathe out. But this does not seem to be constant. It will happen for a number of nights in a row, then either it doesn't, or I'm not aware of it.....Anyway, after the super dose of Prednisone did not help, I was gradually taken off of all meds. At first I got a lot more migraines, but even that has calmed down a bit. Sooooooo, my main rheumatoligst felt it was time I go somewhere else, and he sent me down to Johns Hopkins, but it was through the rheumatology department. He'd thought that I would be scheduled with a neurologist for my first visit, that it would be pre-arranged - but it wasn't. (sigh) I saw the head of rheumatology at JH last week, and he said ..... that I needed a neurologist. So now I'm in the process of trying to be scheduled there - again. He started the process, but the neurologist he thinks I should see there, only sees patients on Monday mornings, so it may take a while. While at Johns Hopkins I did also see a doctor who's specialty is dry eye, and she confirmed that my eye's are very dry, that they qualify to meet criteria for Sjogren's. She also found that the retina of my left eye has lesions on it, and it is felt that probably the Prednisone caused it, but maybe not, and either way have to see a retina specialist now too. .... I guess in a way its good that I've got the dry mouth, considering that I do choke sometimes when I swallow, I really haven't tried to analyze when it happens but its mostly just when I'm drinking water, or just plain swallowing, besides everybody does that sometimes, right? But I fear that this may have complicated getting a diagnosis, you know, dry mouth is not (that I know of) an indicator of any motor neuron problems, so I might be having two diseases running concurrently. As far as enunciation, just recently in normal conversation, sometimes it feels like I've had a few drinks, and I'm trying to talk like I'm sober when I'm not. Its like my tongue doesn't want to move quickly enough. There is no apparent pattern to when this happens though. Also, sometimes at night when I'm trying to fall asleep, my right hand has the fast twitch thing going on too. Its really only when I'm at rest, and is often but not always. I am so frustrated. I asked my regular rheumatologist what would be the next step if the nerve/muscle damage could be attibuted to the Sjogren's, and he said that we'd already tried all of the relatively safe medications, and that all that was left was the intravenous Rituximab, or intravenous Prednisone (the latter done in a hospital setting) either he felt carried too much risk for the little evidence to back up an assumption that the cause is Sjogren's. Plus, I now have the retina damage, so that is another strike against any more attempts with steroids. That about wraps it up. Does anyone have any insight or experience with what is happening to me? Oh, BTW, I'm a 52 year old mother of three, take care everyone and thanks for listening! Diane
 

MtPockets

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Hi Diane,
Just wanted to welcome you to the forum, since it seemed no one has answered your post yet. I have limb onset ALS. I was Dx May 11, 2006 and I have lost the use of my legs since that time. I also have the left half of my esophagus paralyzed and have lost most of the swallowing trigger points in the mouth. Other than that I do not have much experience with the symptoms you are describing. Just hang in there and someone will answer you soon.
This is a great group of people. I hope you will feel right at home.
 

CindyM

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Hi Dianne- welcome to our little corner of the internet. I don't want to lead you to think any of us are doctors here, but sometimes when people have been trying for a long time to get answers, we recommend getting a good neurological work-up from one of the large clinics, especially one associated with a large teaching hospital. I want to warn you that it can take time to figure things out, though. But we will be here for you during the testing and waiting period. regards, Cindy
 

happy

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Hi Diane,

Welcome, I was wondering if you saw the link to bulbar palsy that is on this forum?Some of the old posts have some of the symptoms that you are describing. I pray that you get the answers that you are looking for. It' s good to get anwers, but then it can be scarey. I hope and pray that you do not have any form of ALS.

Robin
 

rose

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Thank you for your replies. Your attitudes are an encouragement to me. I did go over and read some posts on the PBP board. I guess in a way I don't want to learn too much about specific symptoms for fear of projecting them on myself. I can only imagine the frustration many of you have gone through, as I've not been sick even two years (that I'm aware of). Compared with what most of you have dealt with, that is nothing! I think at this point its a lack of a diagnosis that is the most discouraging. As I'd said in my original post, I, as well as my main doctor, am beginning to feel that I have a couple of things going on at the same time and it is confusing the diagnosis ~ then, I read on here that the way ALS is finally diagnosed is by eliminating any other possible causes! I remember that back when my EMG showed the damage, I was almost relieved, just because up to that point there was nothing to explain my voice loss. The neurologist at hospital that I had it performed at (Mt Sinai in NYC) only conducts the vocal cord EMG's once a month, so I was waiting for my appointment, and overheard the doctor talking to the woman that had gone in before me, and he was explaining that they could find no physical reason for her problem, and that she needed to go back to her psychiatrist. At the the time, to me at least, that seemed it would be harder to keep wondering, or to be told it was all in my head, than to find there was a tangible reason for it. It wasn't until later that I found that it still had not gotten me closer to any real answers. And now, I don't want to get so super focused on every little thing. For example, I've started to notice that while I'm eating, especially if its by myself in front of the computer , or while doing the crossword, i.e. absorbed with something else, that I realize after a while that I'm coughing a lot while I eat. It seems that maybe a little is not going down the right way. AND I realize this has been going on for a while too. Well, I don't want to dwell on it, but maybe I should more than I am? Should I try to analyze it, or know that if it continues it will become obvious when and why... I went online and looked up the neurologist that the rheumatologist wants me to see at Johns Hopkins. She is not part of the ALS/MN group, but her field of interest is neuromuscular disease and it says: "Dr. Sumner’s research similarly focuses on inherited motor neuron and peripheral nerve diseases". So I'm guessing that she would be a good place to start as I really don't feel I'm a "text book" example of any disease at this point and time. However, there is no incidence of this in my family, so the "inherited" part bothers me a little. What do you all think?... I do have another specific question. Has anyone had a problem with fatigue, not just of a certain part of their body that is affected, but just all over fatigue? Is this considered to be part of motor neuron disease? I ask because of my confusion as to what should be attributed to my autoimmune conditions, so I guess I need a better understanding as to what ALS is not. Thanks again for your welcome and I do plan to stick around the forum. take care everyone :cool:
 

CindyM

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It seems a lot of folks mention the fatigue. As for the chocking, try to remember to tuck your chin towards your chest if you are swallowing thin liquids. At some point you may want to go to the drug store and pick up "Thicket" or some other such product to make liquids more manageable.

If regular foods are a problem, try grinding up stuff in a food processor. It iwll still taste the same, just be easier to swallow.
 

rose

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It seems a lot of folks mention the fatigue. As for the chocking, try to remember to tuck your chin towards your chest if you are swallowing thin liquids. At some point you may want to go to the drug store and pick up "Thicket" or some other such product to make liquids more manageable.

If regular foods are a problem, try grinding up stuff in a food processor. It iwll still taste the same, just be easier to swallow.

Thank you Cindy, tilting my head forward helps. I did schedule to go back on Thursday to the laryngologist (local doc for me in NYC) Maybe she can get more of an idea of what specifically is causing this, as it has become much more troublesome in just the last week. I wish I had a better grasp of anatomy and the mechanics involved with swallowing!
 

billyd

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Hi Diane, just some general info, I am in the undiagnosed with neuromuscular symptoms group but have experienced swallowing difficulties along with other symptoms. A modified barium swallow test is one tool used to evaluate swallowing. My neurologist ordered it. It is done with a radiologist and speech pathologist. They give you various consistancies of food laced with barium and follow the swallow process under flouroscopy and video tape the process. It evaluates the swallowing process i.e. movement of tongue/palate etc. They start with liquid move to apple sauce then to cracker etc. Just some info from another who is symptomatic. I wish you the best and hope you find answers in your search.

Billyd
 

DavidGL

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Hello Diane,

Your path is quite similar to mine. I started with hoarse voice and loss of projection. It was an ENT who told me to go and see a neurologist. Unlike your case, he opted out of the vocal cord EMG because, he said, "we already know your vocal cord is atrophied". But he did do a full EMG, all of the blood test and the MG test. He diagnosed me with "bulbar palsy" and, unsatisifed with the fact that he had no real answer, sent me off to the Hahnemann ALS clinic in Phila. Ironically, while going through this analysis process, things moved into my legs and began to show classic symptoms of PLS. By the time I got to the ALS clinic there were enough signs to get myself hooked into the program there. By now, after about 2 1/2 years, I have enough difficulty with balance and cramping/tightness in my legs that I will be taking the disability route next Tuesday.

On the bulbar side, I must take frequent pauses when speaking or I begin to stutter, I get cramps in my throat muscles, and often find myself putting liquids into my lungs. I was told to get a pneumonia vaccination because of this. My diaphragm frequently spasms. But I do seem to be holding there for now, with most of the progression towards unpleasantness taking place in my legs and into my arms.

So on Tuesday I will be getting the formal diagnosis of PLS and then be watching for signs of movement into the lower motor neurons. There is a good chance that that will never happen since things are progressing so slowly for me.

You should be prepared for a lot of tests telling you all is normal. This is the way it goes. And it can go on for years. Try not to let it get you down and take each day as it comes, being thankful that you are still not showing the full symptom set for ALS. It means you have some time on your side and a chance to get to some of those things that you've always wanted to do. And always remember that somewhere along the way there is the possiblility that someone will discover that it was really something else all along--something that maybe is treatable.

Good luck to you, Diane.

DavidGL
 

LindaB

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bulbar onset

Hi Diane,
I can definately relate to your dilemna. I started the same way. When I first started slurring my words, it was just after major surgery, so of course I assumed that I probably had a small stroke during the surgery. I saw my cardiologist , family doctor, and finaly an ENT. He told me that I probably was taking too many pain pills! Then , on a return visit , he told me I had anxiety problems. The first neurologist told me that it most likely was a small stroke, and I would be better in three months. He said it was very common.
When symptoms continued and I started choking on food and having trouble swallowing, I went to another neuro. He thought I might have Myasthenia Gravis, but wasn't sure. An MRI showed that I did not have a stroke. I was all over the Internet, as you are. One night, I came across a forum for ALS, describing the same symptons as me. That night I freaked out. As I think back, I did have problems walking at the time, but I was just getting over back surgery . I went back to the neurologist, and he did mention that maybe I had a progressive disease. He said we would have to wait for it to progress to find out. I stopped eating out in restaurants and had to concentrate on eating in order not to choke. I was terrified that I had ALS but test after test did not show anything definitive. I had the barium swallow test and they told me that I was allright. I went to speech therapy unitl I started nasal speech, which terrified me.
Finally, this past September, I saw another neurologist and he tested me with an EMG, and DX Myasthenia. I was happy with that, but then two weeks ago, he tested me again and said I have ALS. All in all, it was over a year from the beginning of my speech problems to DX. All this time, I have been diagnosing myself with a variety of illness' from nerve damage to insecticide poisoning. What a roller coaster of emotions I have been on. I guess I have no answers for you except to say that I feel your anxiety, and hope you are not DX with ALS. You must be very scared. I am so sorry for that.
Now, I am using thickit for liquids, like milk, juice, and coffee, and only eating foods that are moist, like spaghetti, and scrambled eggs. The thickit makes drinking so much safer. I hope you get your answers soon.
Linda
 

rose

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Thank you so much, each of you, for your replies. It helps me not feel so alone. I saw my laryngologist yesterday, and she wants me to have the modified swallow test. The way she explained it sounds exactly like Billy described. It actually is already scheduled in about three weeks from now. She said there didn't appear to be a whole lot of change with my vocal cords themselves, but that the left side of my soft palate appeared mostly immobile, and all of the soft palate was lower than it should be (?). She had another doctor come in and look at it, plus my silly tongue that doesn't stick out straight any longer. Today, the neurologist's assistant down at Johns Hopkins called and scheduled me for the 14th! I was surprised that it will be so soon, as I'd been trying to prepare myself for another long wait. Her office has not scheduled any other testing for me for when I'm down there though. The neurologist is away this week on vacation, so it will depend on what she thinks after she looks at my transcripts once she's back. David, has your voice stabilized as to how it sounds? I need to learn more about the upper/lower neurons because my doctor had told me that it was my cranial nerves 9-12 that she felt (at that time) were affected, and I though that these were considered to be lower neurons ~ But you're saying that even with your voice it is only your upper neurons.... I know it must be a big step as far as the disability decision. And, Linda, how disappointing that your doctors in effect reversed their decision! Do you know what in specific it was that changed it from myasthenia? What a horrible let down that has to be! Thank you all for your support. Right now I'm torn between wanting to learn everything I can, to not wanting to dwell on possible reasons because I don't want to "project" . take care, Diane
 

DavidGL

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David, has your voice stabilized as to how it sounds? I need to learn more about the upper/lower neurons because my doctor had told me that it was my cranial nerves 9-12 that she felt (at that time) were affected, and I though that these were considered to be lower neurons ~ But you're saying that even with your voice it is only your upper neurons....

It is very difficult to find just the right kind of information. For the most part, you either get a very watered-down explanation or get launched into a journal for neurologists clouded by nomenclature. From what I gather, the lowers and uppers are quite near one another in the bulbar area. In my case, it is possible that there could be lower neuron damage right there in the bulbar area (since they do not do an emg of my vocal cord) but there is no sign of this in my tongue (where they have done emg). I have read that, given enough time, one may well find muscles atrophied as a result of exclusive UM involvement. I think I shall ask about that tomorrow...I keep meaning to but always forget. I would say that things have gotten worse but not by much. I know that I do find myself coughing fluids out of my lungs more often now but I still sound very much the same today as I did one year ago. There is much more "tension" in my throat muscles now but that is a very subjective thing.

They tell me I am fortunate to have things progressing so slowly...but what is slowly? It seems fast to me of course, but they see the really bad cases. We all see the world from our particular vantage point. Understanding this allows me to be patient and avoid dwelling on the "tragedy" of the thing. I'll watch the drama unfold even it is my own personal War and Peace. :)
 

LindaB

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Diane,
In response to your comment about how devastating it was to have my diagnosis changed from Myasthenia to ALS,let me say that it was horrible to accept. What happened was that I originally had foot drop in my right foot, and that was completely attributed to the back surgery I had. I had that one foot drop from Nov 2006 until this past March 2008, when my left foot decided to drop. They did another MRI, thinking that it again was due to my back. Maybe something was pressing on my spinal cord. They told me that the MRI was negative, so they wanted to do another EMG. At the time, I was taking Mestinon for Myasthenia Gravis, and that causes twitches, so I stopped taking it 24 hours before the EMG. But, the twitches did not completely stop. He did the EMG, and called me in his office and told me that I had ALS. Then he gave my husband and I a phone number for a second opinion at Columbia Hopsital in New York. I went there this past Friday. They looked at all my test results and gave me a good examination. They went over all the MRI's of my back and neck. Then they told me that I had a lot of serious back issues, including the fracture which is pressing on my spinal chord. Some nodules in my neck are pressing on my spinal chord as well. Then , the neurologist told me that Mestinon should not be helping me at all if I had only ALS. So, the result of this visit is that on May 1, I am having another EMG, and other tests. They told me at Columbia that there is the slimmest tiny chance that my symptoms are caused by my back and Myasthenia, or ..it is more than likely I have Myasthenia Gravis and ALS at the same time.
So, I am not really encouraged , since you can imagine what I have already gone through , being told I have ALS and then waiting over three weeks to see another neurologist. No information, or any help given to us at all since my DX! Now I wait another three weeks for another test! I am on the verge of a breakdown, and am afraid to get my hopes up, for something that is very slim. I am scarecd to death of everything, and have been offered no help at all. Everything I know about ALS, I am learning here, on this forum. Oh God, this really sounds like venting..but thanks for listening. I think my poor husband is tired of listening to me cry at night. I shouldn't be dumping this on you.
I hope you do OK,
Linda
 

rose

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Diane,
In response to your comment about how devastating it was to have my diagnosis changed from Myasthenia to ALS,let me say that it was horrible to accept. What happened was that I originally had foot drop in my right foot, and that was completely attributed to the back surgery I had. I had that one foot drop from Nov 2006 until this past March 2008, when my left foot decided to drop. They did another MRI, thinking that it again was due to my back. Maybe something was pressing on my spinal cord. They told me that the MRI was negative, so they wanted to do another EMG. At the time, I was taking Mestinon for Myasthenia Gravis, and that causes twitches, so I stopped taking it 24 hours before the EMG. But, the twitches did not completely stop. He did the EMG, and called me in his office and told me that I had ALS. Then he gave my husband and I a phone number for a second opinion at Columbia Hopsital in New York. I went there this past Friday. They looked at all my test results and gave me a good examination. They went over all the MRI's of my back and neck. Then they told me that I had a lot of serious back issues, including the fracture which is pressing on my spinal chord. Some nodules in my neck are pressing on my spinal chord as well. Then , the neurologist told me that Mestinon should not be helping me at all if I had only ALS. So, the result of this visit is that on May 1, I am having another EMG, and other tests. They told me at Columbia that there is the slimmest tiny chance that my symptoms are caused by my back and Myasthenia, or ..it is more than likely I have Myasthenia Gravis and ALS at the same time.
So, I am not really encouraged , since you can imagine what I have already gone through , being told I have ALS and then waiting over three weeks to see another neurologist. No information, or any help given to us at all since my DX! Now I wait another three weeks for another test! I am on the verge of a breakdown, and am afraid to get my hopes up, for something that is very slim. I am scarecd to death of everything, and have been offered no help at all. Everything I know about ALS, I am learning here, on this forum. Oh God, this really sounds like venting..but thanks for listening. I think my poor husband is tired of listening to me cry at night. I shouldn't be dumping this on you.
I hope you do OK,
Linda

Oh Linda, I truly feel for you! Every which way one looks at it, its either devastating, frustrating, or both! One of the hardest things seems (to me) to be that there isn't a test to prove that it is the ALS! This business of ruling out all other causes is not that easy, is it? First, when most people get ALS, they're not all that young, so of course there are going to be other things wrong with many to begin with. ~ And in your case, you have so much to deal with just with the back problems alone. Did your blood work support the Myasthenia theory? Just know that I can relate, and my heart goes out to you. I am growing anxious myself about my upcoming appointment, and most of it stems from knowing we're going to have to revisit that gray area of if my Sjogren's could be the cause (my blood has never had antibodies to support sjogren's or myasthenia, etc) and then I think, what does it matter if it's the sjogren's, as it has failed to show any response to treatment? Would the outcome be any different? .... I will be thinking about you on May 1 for sure. Also, if you want yet another opinion, Dr Mark Sivak heads up the ALS/Myasthenia clinic at Mt Sinai, he is the one that did the EMG on my vocal cords. The phone number to his office is 212- 241-8747. (hugs) Diane
 

rose

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It is very difficult to find just the right kind of information. For the most part, you either get a very watered-down explanation or get launched into a journal for neurologists clouded by nomenclature. From what I gather, the lowers and uppers are quite near one another in the bulbar area. In my case, it is possible that there could be lower neuron damage right there in the bulbar area (since they do not do an emg of my vocal cord) but there is no sign of this in my tongue (where they have done emg). I have read that, given enough time, one may well find muscles atrophied as a result of exclusive UM involvement. I think I shall ask about that tomorrow...I keep meaning to but always forget. I would say that things have gotten worse but not by much. I know that I do find myself coughing fluids out of my lungs more often now but I still sound very much the same today as I did one year ago. There is much more "tension" in my throat muscles now but that is a very subjective thing.

They tell me I am fortunate to have things progressing so slowly...but what is slowly? It seems fast to me of course, but they see the really bad cases. We all see the world from our particular vantage point. Understanding this allows me to be patient and avoid dwelling on the "tragedy" of the thing. I'll watch the drama unfold even it is my own personal War and Peace. :)

David, let me say that you express yourself very well :wink: Its a shame that its under these circumstances that we get to know one another. I'm glad that nothing else has developed in the bulbar area for you, at least yet. Please let me know what you find out. Good luck tomorrow.
 
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