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isabella

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Joined
Oct 16, 2008
Messages
10
Reason
PALS
Diagnosis
01/2008
Country
US
State
ct
City
farmington
Hi I am very, very new to this forum and am wondering if anyone has been to Yale MDA/ALS Clinic in New Haven, CT.? I have an appt there in 3 weeks and am curious what is in store for me. I have had speech and swallowing problems for about 6 months now plus some twitching in my face. I have had several tests and scopes with no definitive results so I am being referred to Yale. I am actually happy (also anxious) but am looking for answers. If anyone has been there please let me know. You all seem to be so caring and I have been so depressed about this I thought joining your forum would help me.
Thanks,
Isabella
 
Hi, Isabella ... welcome to the forum. I'm sorry you had to seek us out, but I'm sure our members will have some helpful ideas and lots of support.

I haven't been to the Yale clinic, but at my first visit to a university clinic, they took an extensive medical history, and did the usual neurological tests ... bonking me with little hammers, watching me walk, stuff like that.

I'd recommend taking with you a list of all your meds, and also a list of your doctors, with their phone numbers, etc. If you have copies of the tests and scopes you've had done, that would be good to take along. Also, a few notes about your medical history (surgeries, etc.) as it's easier to have it written down for your own reference when they ask you questions.

The first visit they will basically be getting to know you and you them. They'll probably give you their impressions, and schedule more tests.

Good luck! I hope you get good answers.
 
Thanks BethU --

Thanks for the welcome----did your symptoms begin with your throat? I can hardly speak sometimes I am so hoarse--my laryngologist feels my vocal cords are starting to atrophy. Is there any member that has had these throat issues first? Now I keep getting twitches down my face starting at the corner of my Left eye---it is such a strange feeling--do you know what I mean? I am going to spend more time on this forum reading peoples stories and hopefully I won't feel so alone and depressed.
Isabella
 
Hello, Isabella. We have not been to the Yale clinic, however we did go to the UConn ALS clinic (which is in New Britain), headed up by Dr. Kevin Felice and Dr. Charles Whitaker. They were recommended to us by an ALS researcher at Brown, who said they are the best in the Connecticut region. After receiving a diagnosis of a motor neuron disease from UConn, we then went to Columbia New York Presbyterian neuromuscular clinic for a second opinion and possible inclusion in drug trials. We had a very good experience at Uconn, lots of support, and they took the time to answer our questions and educate us. Good luck at Yale -- please let us know how it goes. When is your appt?
 
Isabella, forum member Rose has had all kinds of issues with her throat, and will be able to really help you. My bulbar problems started with slurred speech, and eventually worked into my throat, so that not only my speech but my voice has been affected.

I have twitches under my eyes, which I can't feel, but twitches on my upper eyelids which are very strange and annoying sensation!

I'll see if Rose is around ...
 
Hi Isabella, welcome to the forum. :)

I understand how overwhelming it feels to not know what is wrong, and the Great Unknown can loom large.... So you need to hang out with us, because we're all about confronting our monsters, and trying to have a good time with each other while we're at it. ;) There are a lot of wonderful, caring people on here.

I have not gone to the Yale clinic, however I did initially start with voice problems. That and some breathing oddities.

I wish I knew more about the Yale facility so I could help out with what to expect.

I'm assuming that you've been having laryngoscopic examinations of your vocal cords. (those are fun, right?)

I would not think that you will have this done at the Yale clinic, but you should make sure that they have the reports from it, if possible each time someone took a look at your vocal cords for the sake of a timeline. In fact any tests you had run, if you can obtain the actual materials, MRI films, the physical slide if a biopsy was done, rather than just the report. Often times when one goes to a big facility like the Yale Clinic, they will want their own pathologist, etc to interpret results.

If you've had a brain mri, the doctor you see there might still want for you to have another more specific mri of the brain stem only. My neuro referred to it as a coned down MRI, but that most likely is not the official terminology.

If you have problems in the throat area, those muscles are controlled by cranial nerves in the bulbar region of the brain stem. These are called lower motor neurons. There are 12 pair. In the motor region of the cerebral cortex are the same number of pairs of what are called upper motor neurons. So, if you have weakness in that area, it can be from either the cranial nerve that operates the muscle (lower) or a mis-communication between the upper motor neuron and the lower motor neuron., or a combination of both upper and lower.

There are other diseases that can cause problems here other than ALS.

Myasthenia Gravis is one treatable condition. Other autoimmune (inflammatory) conditions can infiltrate the nervous sytem, they too are treatable.

Peripheral neuropathy can also affect the throat, face and mouth region. Sometimes neruopathy is treatable, and other times it resolves on its own...

The nerves that usually are affected in motor neuron disease, are cranial nerves 7-12, skipping the 8th.

Sometimes more than just motor function of the nerve is affected. For example; people will have too much saliva, or less commonly (me ) dry mouth. The way they explained it to me was that although it is a disease of the motor neurons, it does not limit itself to just motor neurons 100% of the time,

Have you had an EMG performed?

Have you met with a speech pathologist and gone through a modified barium swallow study?

I did have an EMG of my vocal cord muscles. It was done at Mt Sinai in NYC, and apparently this is one of the few places that do this on any sort of regular basis. I attend the ALS clinic down at Johns Hopkins in Baltimore, and even they don't routinely do vocal cord EMGs.

I underwent a surgical procedure last November to address the problem of vocal cord atrophy. My laryngologist injected them with filler (similar to collagen cosmetic wrinkle filler). I'm not aware of anyone else currently active on the forum that has had this done, although there may be, and the subject just hasn't come up.

The procedure did fix the gap due to my vocal cords being bowed, however it did not improve my voice. It is not understood by anyone why it didn't. At this point, the filler has pretty much all been absorbed by my body (as expected ) and right now there are no plans to repeat it.

I don't know, as a new member, how soon you will be able to view photos posted by other forum members, but, once you've been around long enough, or posted enough, (I'm just not sure of this forum's criteria) you can click on my user name, Rose, and on my profile page I've created a photo album open for public viewing. The title of the album is actually "lip atrophy" but I did include a fairly recent photo of my vocal cords.The atrophy, especially on one side is easily seen.

As far as my particular situation, a lot is just not understood. At this point, I have a diagnosis of progressive bulbar palsy, and "probable" motor neuron disease. The distinction is that I do have bulbar palsy, which means weakness, but it is not definite that the cause of the weakness is due to motor neuron disease. All other known causes have been ruled out however.

Why its been different than most others with bulbar onset of ALS, is that my voice is much more affected than my speech. I do have some speech problems, particularly a lisp, worse some times than others. I also speak slowly now.

My voice is hoarse, breathy, and I cannot project it. The lack of projection and weak expiration is one of the key points that is not really understood, as far as I can tell by my doctors (or me LOL)

I have a weak soft palate, weak swallowing, weak eye closure, weak lower lip and tongue, both with atrophy.... then there's the swallowing mis-coordination, and some esophageal problems ~ sheesh, this sounds so bad reading it, but honestly I'm really pretty normal seeming if you were to meet me on the street, you'd think I just had laryngitis, and perhaps a couple of drinks due to some slight slurring, but its still not overt. I have to repeat what I say fairly often, but that is just due not being able to project my voice, rather than sounding garbled.

I first started thinking something was 'off" in the late spring of 2006. I mainly just had severe fatigue, and ropey white saliva at times (yuck). I had dry eye and dry mouth. By September of 2006 I had some breathing issues, and started to sound hoarse at times.Other than the fingers of my right hand being stiff and getting stuck in position if I tried to open a tight bottle cap, all of my problems that I noticed were confined to the throat and mouth region until late spring, early summer of this year. Recently, my legs went from "perhaps" feeling a little weak by the beginning of July, to being definitely weak with fasciculations and cramping in August. My arms are a little weak, and my left wrist is more than a little weak.

I have a diminished, almost absent gag reflex, brisk reflexes elsewhere, brisk cross detector at the knees (whatever that is!), no clonus. I do have difficulty walking, standing for periods of time. So far no orthotics to help, I have the prescription for them, just haven't brought myself to take that step, no pun intended, yet. My left wrist is also weak.

I hope t his is helpful to you. Please don't ever feel you're alone, and no matter how unusual it may feel to you and your family/friends, that its taking so long to get to the heart of the matter, and a diagnosis; it really is just the way it goes for most of us.

Good luck, and I look forward to seeing you here. :)
 
Rose,
WoW! Thank you so much for your detailed response---I didn't expect it----I really appreciate the time you put in to it. Unfortunately, I am on my way to a root canal (it's always something, isn't it?) so I can't stay on longer but wanted you to know I am thankful I have someone I can "talk" to on this forum . You are very kind.
Isabella
 
SavoringLife,
Thanks for that input----I don't know why I am being referred to Yale instead of UConn---I will have to find out. My appt is in 3 weeks. I will let you know how I make out.
With thanks, Isabella
 
Hi Isabella,

Root canal too! It just doesn't get much better does it.

Please let me know if there are questions I may be able to help you with. I don't know if you can private message yet, but you can just post here, and I'll check back later.

Keep your chin up (even if its numb right now LOL) You'll find a way to cope, regardless of what your troubles stem from!

take care, :)
 
Yale ALS Clinic

Isabelle

My father was diagnosed with ALS at the Yale New Haven clinic. He was seen by Dr. Goldstein there who was very thorough with testing before he made a definate diagnosis.
Dr. Goldstein then gave my parents so much helpful information and answered their questions whenever one would pop up. From what I understand, it's one of the best places to go.

It is scary and no one wants to hear bad news, but since ALS symptoms can mimic so many other diseases ( which are not as threatening), you need to know for sure in order to proceed with your care,

I wish you the best, hang in there and always, always think positive. This could very well not be ALS.
 
Isabella,
Welcome to the forum! I was lucky enough to have my first ever root canal in June of this year. I always used to joke about them, and after having 4 in one month, they were not really that bad.
I certainly hope yours went well, and that you have a great weekend!
talk soon,
brenda
 
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