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rose

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Hi everyone, I went for my appointment down at Johns Hopkins yesterday. No real surprises. My neuro did not give me a diagnosis, but said that everything other than ALS had been ruled out. She said that the guidelines required for me to have the EMG from three different locations that showed denervation, and I had only the vocal cord one. I think also that this EMG was done at Mt Sinai in NYC rather than at Hopkins was somewhat of a factor with her.

She was somewhat puzzled as to why the doctor ~ who was there at at Hopkins ~ that did my tongue EMG back in April, did not insert the needle where the obvious signs of atrophy were, but rather at the back of my tongue. I said he'd told me it was because I'd bleed too much if he stuck me there, and she acted like she didn't feel that was very good reason, but kind of shrugged too, as there still needed to be a third EMG that showed the problems anyway. I asked if there was ever one done for the lips (my poor lower lip, sigh,) but she did not want to repeat any EMGs or try new places, but thought it better to wait a few months.

She said that for disability purposes that she was going to put down bulbar-variant ALS, but that she was not ready to say for sure that this is what I have. She said that although I'm feeling worse in some ways from when I saw her in mid-April, that from what she could observe objectively, the only dramatic change was with my lips, the lower lip in particular. My reflexes and everything else were pretty much the same as when she examined me before, so it wasn't moving as fast as sometimes it does.

She noted that I was interested in participating in any clinical trials that I qualified for, and sent us up to meet the Director of the ALS clinic while we were there. She said that she would still be my primary doctor, but that the ALS clinic is a team that will manage all the various supportive aspects of my care. She also is writing a prescription for blood work to make sure it is safe for me to take Riluzole, and the script for Riluzole.


We went up to the clinic when I finished with her, and it was just a real quick hello, they tested my breathing, explained a little more about what to expect at my clinic visits, and then said I could go. (they didn't have my records yet). This morning the coordinator for the ALS clinic called and scheduled my first visit for the end of September.

I'm just now re-reading what I wrote here, and, I know its probably just not that interesting to many that have already gone this route, but I'm hoping to help those that are just starting out, to give an idea as to one way that the process may go for them too.

take care :)
 

brendapals

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Rose,
I will certainly keep you in my prayers. I just had my first ALS Clinic visit on 7/1/08. Most of the therapists that came in the room were pretty much speechless when I told them my background. During the 22 yrs I worked in retail pharmacy, I sold tons of wheelchairs, lift chairs, hoyers, walkers, nebulizers, oxygen and the list goes on and on. My neuro told me that his clinical diagnosis was bulbar ALS. That was 6/3/08. Nothing much has changed for me- my speech is very slow and deliberate. I seem to have more saliva production in the last week or so maybe-or maybe I'm dreaming?
Keep the faith,
brenda
 

fiddleplayer51

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Rose,
I hope you can feel some encouragement that nothing has changed other than your lips, that it is slow-moving. However, I'm sorry about your lips. I gather that they have atrophied and thus have changed shape? Has this noticeably altered your appearance? If so, I would imagine that would be a tough issue to deal with especially for an attractive person who has been in a profession where appearance is important.

You don't elaborate on how yesterday's visit with the neuro has made you feel. I hope you're holding up as well as can be expected with the uncertainty. Having our kids to think of is a plus for us moms when we have heavy issues to deal with. I know when I had breast cancer ten years ago and two of our daughters were still at home, it was having them to consider and be available to that was the most help to me. It got me out of myself and my immediate concerns.

I wish you well during this time, Rose. Yet another wait until September, but I hope you can enjoy the time between without too many bothersome symptoms and anxious moments.

Take care.
Jane
 

olly

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hi rose

firstly,i found your post intresting as a friend.
also now i am pretty sure my symptoms are not too much to worry about as they are no way as bad as yours.
i am so sorry its another wait and see episode(been through dozens of these)
you have your family,beautifull kids, all us folk here who are with you all the way.
i suppose your neuro is right to be cautious for now,but i do know how frustrating it is when there is something obvious wrong but they cant tell you for some reason.
there is a saying "ignorance is bliss", i never realised how true those words were.
you are still in my thoughts.
take good care.
caroline:)
 

rose

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Rose,
I hope you can feel some encouragement that nothing has changed other than your lips, that it is slow-moving. However, I'm sorry about your lips. I gather that they have atrophied and thus have changed shape? Has this noticeably altered your appearance? If so, I would imagine that would be a tough issue to deal with especially for an attractive person who has been in a profession where appearance is important.

You don't elaborate on how yesterday's visit with the neuro has made you feel. I hope you're holding up as well as can be expected with the uncertainty. Having our kids to think of is a plus for us moms when we have heavy issues to deal with. I know when I had breast cancer ten years ago and two of our daughters were still at home, it was having them to consider and be available to that was the most help to me. It got me out of myself and my immediate concerns.

I wish you well during this time, Rose. Yet another wait until September, but I hope you can enjoy the time between without too many bothersome symptoms and anxious moments.

Take care.
Jane

I agree that being a mom helps, if for no other reason than needing to be strong. And, probably your surviving breast cancer is a major factor in you being such a caring member of this forum to others now!

As far as how the last appointment made me feel, I wasn't given any hope that this is anything else other than ALS, but it was encouraging that she does not think it is progressing as quickly as bulbar onset often times does.

I think I want the "closure" for lack of a better term, but then again, if she'd said that's it, that's your diagnosis, I'd probably just be second guessing her now in my mind, thinking she was too quick to say it without the 3 dirty EMG's.

When she didn't feel any further diagnostic testing was called for, I asked why some people have a muscle biopsy or lumbar puncture done. She said that was because so many diseases can mimic ALS, that depending on the symptoms they would do those tests, but that I hadn't the signs that would indicate a need for them.

I guess if there was any other disease that she still wanted to rule out, it would have made me feel so much better. Now that she's not seeking other alternative causes, it leaves me knowing that the bulbar als is the only real suspect. She had tears in her eyes when she was telling me that ALS was what it most likely was.

As to my lips, yes, as a woman its distressing to have them change! It's mainly on the right side at the bottom that sort of bubbles out rather than gathers up when I try to purse my lips, it does it a little on the left, the center is stronger. Its kind of like if an elastic thread broke inside my lips on the right side, and is getting stretched out on the left. Both of my lips are thinner (flatter) and have wrinkles.

I remember reading another thread of a separate post where Patricia1 was using her grandson's sippy straw cup, so and its such a good idea because regular straws aren't so easy for me to use. So, I'm on the hunt for a grown-up cup with a rigid straw, then I can stop pouring half of my diet coke down the front of me when I try to drink :) Its not like my middle name was "Grace" even before all of this started!

Brenda, my speech is slow, and I pretty much have a lisp all of the time now (which I hate! when I slur I figure its almost better because people probably just think I'm tipsy rather than having a speech impediment!). But, back to the slow part. I guess that is caused by the upper neurons according to my neuro, where as my weak hoarse voice is a lower motor neuron problem. I hope you too continue not to see too many changes. Its funny you said that about the saliva, because I've had dry mouth for so many years, and now, every so often, I get this extra saliva in my mouth and I don't like it because its almost like when we salivate because our stomach is upset. I'd gotten accustomed to the dry mouth I guess, plus when it does it, its not like my mouth gets nice and evenly moist, but rather the salivary glands that do still work go into overdrive!

Oh! one more thing, I'd tried to describe to my neuro how my hand/thumb will twitch and jump for extended periods of time. I told her that one day it was so constant that I actually took a video of it. She asked me if it was a digital recording, and when I said it was, she was very interested to see it, and asked if I would email her the video, as it would give her a lot of information to be able to see for herself. So when I got home, I tried to compress it to send it, and couldn't make it work, but then I thought "You Tube" ! :) ... and, I signed up, uploaded my thumb twitching, and emailed her the link to the YouTube video. My kids are very impressed that I did it on my own (they still have to help me everytime I even get a new cell phone model) :cool:
 

rose

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Caroline....

Now see, you've made me feel so much better just because it was an encouragement to you! When I was in the exam with her, I had to stop myself from asking her questions about what you were experiencing!
 

lovelily

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Hello Rose!

I am sorry that your doctor feels that your diagnoses will be 'ALS'. When you said the doctor had tears in her eyes, it brought tears to mine. No doctor wants to see this for their patient, nor anyone here.

I will keep you in my prayers that this will move very slowly.

take care
lovelily
 

lostinlouisville

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Rose

Hi, I am so sorry for the diagnosed. I have not talked to many on here, but I want you to know I read about you all. I am more of a silent partner. When I read your post this morning I hit my knees for you. This sight has opened my eyes to the struggles out there that you don't even know people are going through. When I pray for you all I do it individually not as a group and your touching stories have added a lot of names to my prayer list. I really pray your progression will be slow or halt {just so you know how I am praying}. You young lady have a wonderful since of humor and make me smile at most your post, keep it up. I am really coming out of my shell and posting more, Sometimes I feel I don't belong because I have no diagnosed. but also think I do because I keep you guys in my thoughts and prayers and forget about myself for a while. You are compassionate people and I would do anything I could for any of you.
 

olly

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lostinlouisville

i was so touched by your humble post and felt the need to reply.
majority of people here have a reason for being so,wether they have a definate diagnosed or not yet.
you are just as important as anyone else here and so are your comments/posts.
you are now part of a caring family here ,myself and i am sure many others will keep you in our thoughts through the tough journey of your diagnosed.
take good care
caroline:)
 

Shatzie

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My diagnosis is similar, the neurologist called it a diagnosis with caution. I have shown little if any progression in the year since I started having symptoms, but nothing else was found. I just try to remember that the doctors, even the experts don't know everything and even the ALS specialist who diagnosed me said that occasionally there is someone like me who is diagnosed, and eventually it is realized that they do not have ALS.

I have found a cup by MiGo, it is called the Aero Water Tumbler. They have it on Amazon (so you can see what it looks like) and I bought mine at Target for less than $10. It has a hard(er) plastic straw that can be reused.

I was told on my last visit to the ALS Clinic that it is best for bulbar ALS patients to drink from a straw, even though some people on this forum have said not to. If someone has had a stroke or similar situation, they are told not to use a straw, but in ALS swallowing is different and it is best to use a straw.
 

Sammantha

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Hi Rose! Neurologist's are the craziest doctor's i ever met! One will say, this looks like this disorder, the next will say no, and do the tests that prove it... Then the specialist will disregard all the thousand's of dollars worth of testing and years of waitful watching only to want all new test and waitful watch themselves. My neurlogist at Duke suggested i get a new doctor an internal one, because my GP was not addressing why i had lymphadenopathy or why i had nausea and vomiting. (Allergies and bad Gallbladder!) The neurologist wanted it to be something that had to do with that instead of it it being neurological. After i saw the internal doc who is a woman, she went over my tests had me repeat some and then said, you have a neuromuscular disorder and something is going on with your motor neurons. She agreed i had severe allergies and concluded that is why my lymph nodes were minimally swollen all the time. She said none of that would cause all the muscle problems, abnormal EMG and wasting...... Finally someone had the guts to admit what was going on! I know you are greatful you do not have an ALS diagnosis, but that does not mean you dont have it? It's the craziest thing in the world. Maybe ya do, maybe ya dont, maybe you do, maybe you dont......... Its enough to drive anyone crazy! Personally i feel i can no longer hold back my sarcasm with my doctors......... I had two EMG's before i went to an ALS specialist and when he ordered a new one i went to the hospital to have it done. The techs look at me and say, your doctor suspects that you have carpal tunnel so we are going to do some tests, okay? Meanwhile my order said EMG to rule out ALS. Then they did my back and neck muscles? I do not know if its because i am young, a woman or blonde but i swear to god if one more doctor tries to talk to me like i am an idiot and downplay whats going on, i will let them have it! Sorry i rambled on but i am glad that you are writing about your updates because i care about you a lot. Sammantha
 

vmd

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rose, shatzie:

It's good to hear that your symptoms are progressing slowly. I know that patricia1, on these boards, has had bulbar symptoms for years and is doing well.

How do you feel about taking the Rilutek?

I keep the members on these boards in my prayers when I say my Rosary.
 

rose

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I am so moved by the genuine caring words that each of you have written! Its overwhelming to me. I am so grateful for this forum, and hope that I'm able to give more than I receive from it! Thank you for letting me know that not only am I not alone in this, but that you each understand (all too well) what this is like for me. God bless each and every one of you!
 

fiddleplayer51

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I know that you give alot, Rose. I've read your posts in reply to others and have seen how others have benefitted from your advice and insight.
I hope you can rest tonight and feel refreshed tomorrow.
Peace to you, Rose.
Jane
 

planningguy

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Rose -

I'm sorry the news was not what you were hoping for. It does sound like you have a very compassionate neuro, and even with reservation, it can't be easy to give a diagnosis like that.

I just wanted to let you know how much I have appreciated the concern that you have shown for others on this board whether they be PALS, CALS, or just worried folks. I know that it has helped me as I have wrestled (and panicked) working my way through my own health issues.

Take care,

Robert
 
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