Old 02-26-2009, 07:44 PM #1
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Default My als/ neuro appt

Well, I will try not to make this to long but I have a bit to say and those that know me, know that I can get a little long winded.....

So, Ihad my repeat emg and saw the other head nuero at als universty (whom has been in als for 30yrs). He did the emg himself and it was perfectly CLEAN, again. I showed him the area's of concern and he picked those ones to go in at. He had me sit and then stand up so he could see exactly where I had my 'perceived atrophy' and stuck me there. He then stuck me right in between my thumb and index finger where it is thinner and it was good. My thighs that are weak, same thing. He left the needle in to look for any fasics and wouldnt you know it, none showed! He went on to say that I won his contest for the 'most beautiful motor unit potentionals", hmmm. I asked him pointed questions about my muscle thinning (shrinking hands and feet) and he put the needle in those area's and turned the screen to me and explained everything and showed me everything, it was really nice. THe muscle loss I have he said can not be due to als or it would show on this, he said my mups are good, and this has been going on for a little over a year. He explained everything to me. He said you may be 'feeling weak' but it is not clinically weak. HE then emphatically said 'you do not have als', I have been doing this for 30yrs. He said you have some issue that is causing fascis (but they are not patholical) and we could run a zillion tests and still never find out what the deal is but it is not als. So that was emg/lmn, I then met with my other nuero and we talked and I got to see my records finally! If I would have seen my clincals (for umn) I may not have been so freaked, here that goes.

no tongue atrophy (the teeth marks dont count I guess), there is no increase in her jaw jerk (first exam said I had jaw jerk, 2nd exam said I had normal jaw jerk, this time no increase in it? I guess I am not an increased jerk), her gag is normal (on first visit it was slightly hyper), there is no pronator dirft, her strength is 5/5 in upper and lower extremiities, her gait is normal, no spacisity, she is able to toe/heel and tandem walk, there is no rombergs, her reflexes are 1 at the triceps and 2 at the biceps and brachial radialis. Her knee jerks were less brisk than last time (they were 2+ without clonus on the other sheet) and ankles were also 2. there is no increased tone. no babinski.

Well, if I would have known all that these past months that may have alleiveated some of my fears. I just rember after the first time I went there, they said you have brisk reflexes and some slight toe things.

Anyway, with another clean emg (after twitching and muscle bulk loss) after one year and NO upper motor nueron signs and my reflexes getting less brisk and being in the 2 area......I have to BELIEVE and KNOW that this is not als. It is bittersweet for me because I heard today what alot of pals/cals longed to hear. And somehow I cant feel happy for myself when so many wonderful people dont get to hear what I heard. I actually feel so heartbroken and crying while typing for all the courageous and strong pals and cals here on this site. I just feel such a mix of feelings today. I told my neuro that maybe God had called me in this direction to help in the als area and maybe I could volunteer, she said NO WAY is that I good idea for me and that I need to end this and give it a year and that could feed my anxiety about als she said help with out muscular dystrophy, we will see.

ANyway, for those that have followed my story know that I have Real sx and this has been struggle for me. Today is the first day in a year that I feel and believe that I may be Ok and not have als. I have soo many things that alot of un diagnosed have, I had to have help peel potoatoes at christmas because my hands were so weak. What I have learned from this forum is more than anything I can express in words. After seeing all you pals/cals and love and courage and support that you all go through daily, the strength.....I know that whatever I face in my life that I can handle it after being on this forum for the past 9 months. This als space taught me about my fears and other people and what the human spirit can endure. It helped me learn to be myself no matter what and not give in to the fear (well, I did do that once or twice). I think that I will live my life better for having spent time here.

There is that small part of me thinks maybe..... (it is in the begining, I told my neuro that and he said 'you will not get als in even the next 10 yr ).but my doctor said that would make me an OCD whack a doo that needs therapy. They did suggest therapy a few times for my fear/anxiety. I said I would have no fear if all my sx go away. I have to let this go. I do know that there is something going on but I have opened my mind to that it is most likley autoimmune and that does not always show up (Ok, "wright' you may have been right!). I just hope that this helps another un diagnosed that has all the issue's that I had know that they may not have this. I was 99% sure I did, all my sx fit (in my mind)! Infact I pushed up my emg because I was getting worse! So, like wright said before 'just because it is getting worse, doesnt mean that is MND'. I have even promised myself that I will not google or look ANY website for any reason for my sx. I may go back to my rheumy or endocrinologist if things get too worse.

Well, that is it and I want to offer a BIG thanks to all the wonderful people who put up with me......

Blessings to every single person here!

April
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Old 02-26-2009, 08:06 PM #2
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Congrats!
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Old 02-26-2009, 08:39 PM #3
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April,

That's great news!
I will talk to you later, I need to get the kids ready for bed.
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Old 02-26-2009, 08:48 PM #4
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April....sending my love~I am so happy everything is fine, as far as 'MND'. God bless you! Your emotions are very understandable!
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Old 02-26-2009, 09:07 PM #5
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I'm very happy to hear of your news, April. I hope this doesn't mean you're going to leave the site, though. I have noticed that the advice you have been giving over the last few months has been wonderful . . . not that it wasn't prior to that . . . but lately you have been saying things to the "undiagnosed" that have been great. I just wish you could have listened to yourself so you could have comforted yourself.

I think that if you deal with your anxiety, your symptoms will get better. One of the worst things for autoimmune conditions (if that is what you have) is stress. Actually, stress is one of the worst things for anyone, whether they're perfectly healthy or not.

I know I was kind of harsh with you a couple of times, but I hope you realize I did it in an attemtp to help you. Keep your head up and I wish you peace and good health. Take care.
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Old 02-26-2009, 11:18 PM #6
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April,

You've had a long road. Congratz on the outcome. Continued good luck

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Old 02-26-2009, 11:20 PM #7
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April,

Thanks for the update! It sounds like your visit to the clinic was not only very informative but very pleasant, as well.

You have to be breathing some sweet relief!

Celebrating with you,

Zaphoon
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Old 02-27-2009, 12:05 AM #8
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Congratulations on the fabulous news! If you can, take some time off, take a trip, have a party, whatever will work to help you forget about ALS. I'm in agreement with your doctor, you should only stay on this forum (or any other medical forum) if it's good for YOU.
Also like Wright says, stress and anxiety are bad and will only make things worse.
So go on, celebrate, we are there with you at your party!
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Old 02-27-2009, 12:47 AM #9
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Great news April. I hate to lose members but it's fabulous when they walk away and not slip away. Good luck.

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Old 02-27-2009, 08:01 AM #10
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Great news April! So glad to hear that. Talk to you later.
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Old 02-27-2009, 08:11 AM #11
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Default April

I am glad to hear your news. I know we will still be hearing from you and you have alot to offer here, HOPE. I am so happy the DR'S were pleasant, that always makes things nicer. PM me later and let me know how you are doing.

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Old 02-27-2009, 08:46 AM #12
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thank you everyone for thier well wishes and thoughts! This is such a great and caring space. It is so difficult when your body acts freaky and you dont know what the heck is going on. I do want to offer hope to the nervous few.....
I ALMOST slipped back to the dark side (as my boys would say/star wars) when last night I asked my husband if I should be worried that I forgot to have him stick me on my right hand and right calf (he did the knee where I was concerened but only other calf), he bugged his eyes at me and I retreated and knew in my mind that I was going backwards! I let it go quickly. All I do know is as of this moment, I do not have mnd.

I was looking at my posts, 924?! wow, I think I have to stay untill I hit 1,000. Thats a nice number. I am glad that you all stuck it out with my spelling errors and leaving out words. I look at some of my posts and dont know what I was writing! Even now, I am typing with one hand and holding my baby girl in the other, and never have time to proof read!

Wright, you were never that hard on me, nothing that I did not need to hear! Sometimes we cant see through our fears.....

Take care all.
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Old 02-27-2009, 08:48 AM #13
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April,
YOU GO GIRL! I am thrilled with your news! Like wright said, your kindness and encouragement really do come thru in your posts, but also you need to listen to your neuro.
I know I would love to keep up with you, if you want my email address, just let me know and I'll pm it to you.
Again,
CONGRATS!
hugs,
brenda
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Old 02-27-2009, 01:42 PM #14
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April,

Of course you have to stay to 1000 posts, because then you become a "very helpful member." I'm glad you got the results you did, and I hope it has brought you tremendous peace of mind. You've always been there to lend a kind word or thought to others, and its been a long road for you.

Have a wonderful weekend with your family.

Take care,

Robert
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Old 02-27-2009, 03:08 PM #15
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Hi, April ... so glad for your continued good news. We were all so thrilled with your first cleam EMG, and then, opps! you done did it again !

I want to see you make that thousand post ... but I kinda agree with your doctors (and your husband) ... sometimes it's harder to taper off than to go cold turkey and make a clean break. You really need tp put this obsession behind you and get moving forward.

Best of luck! Enjoy your life!
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