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tag0620

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175
Diagnosis
11/2008
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ut
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park city
Just had our second appt with our new neuro (the last one was 6 weeks ago)

He sounds pretty certain now that this isn't als, has shown all of our images to a neurosurgeon who has agreed to see us, and has written the referral.

He says that he can't promise that the neurosurgeon will want to do the surgery..but "it's likely"..he just can't say that as it's up to the surgeon to decide.

Whatever weakness/progression the neuro was looking for in the upper body was not there and in fact Jim appeared stronger in the upper body than at the last appt.

His sensory issues are consistant with the herniated disc and myelopathy and he feels the fact that he has the spinal cord damage in the thoracic region may be compounding potentially continuing problems in the lumbar region from his back break/fusion.

He said that als just doesn't localize in the lower body and not move. All of the emg findings are only in his legs and thoracic paraspinals which are all explained by the spinal cord injuries..there was NOTHING in his cervical or bulbar regions.

IF the surgeon agrees to the surgery..it'll most likely be a very BAD one with up to three weeks in the hospital following surgery...but we told him we'd gladly take it.

He was very diplomatic when it came to his colleagues...but said that they "waffled" and stopped looking..and you don't do that with a terminal diagnosis. He also said he was impressed with our tenacity!

SO...it's not over yet (we need this surgeon to agree to surgery), but it feels like we're on the right path and don't feel like we're staring down the throat of this horrible diagnosis anymore...we just need to save his legs...I HOPE I HOPE I HOPE!

THANK YOU EVERYONE! I'm not going anywhere though..and you can be sure I'll continue to update and follow everyone!

Much love and appreciation,
Tracy
 
That sounds like GREAT NEWS! I hope it turns out well.
 
Thanks so much Joel! The sharing and spirit that you all have shown to us has been such a blessing in helping me keep up hope and "fight"..you are a true example of not giving up when you have belief!
 
Tracy,

That's great news! Whatever happened with the new emg, did he ever get it?
I'll be praying that this guy agrees to do the surgery....
 
Tracy, I am so happy to hear the latest. Of course you would take the 3 weeks in the hospital! Your tenacity is an inspiration!

Lydia
 
Thanks Crystal..He didn't have the third emg done. We found where the Dr. who diagnosed him said that "he read the reports from his previous emg and where they found neurogenic changes in lumbo-sacral but not in the thoracic paraspinal and the limbs were not tested"....BUT....when we got copies of the first emg....it showed clear denervation in the thoracic paraspinals...so he either never read the original reports or he made a BIG mistake because when he did the second emg and it showed denervation in the thoracic paraspinals...it appeared like a progression...when in fact...it had always been there...and was always explained by the herniated thoracic disc causing the compressive myelopathy (oh..and there was nothing in his arms/neck/face/etc). We were told the surgeon may or may not want another one....but for now....we didn't need the third.

Thank you lydia! We won't know until we get in with the surgeon what we are potentially facing or what our long term prognosis is...but...yes...we'll take it!
 
Tracy,

I echo everyone else's sentiments... and, you know, worst case scenario, if the surgeon won't opt to operate, or the surgery does not achieve the desired outcome ~ for your husband to be cleared of ALS is still wonderful. I know you said "not yet" but it looks like its heading that way.

Regardless of what happens next, you still have a long road ahead of you. Jim is a very lucky guy to have you, and I've got to think from reading your posts, that you feel the same about him.

Thanks for posting the update, it gives us all the satisfaction that there is always hope, and that determination can pay off.
 
Thank you Rose! We just had this discussion tonight at dinner....that even if we can't get back to "normal" we will look for zest in life in new things and savor life even more since we're most likely being blessed with time that we were told that we wouldn't have. No matter what challenges we face in this recovery...it looks like we're being given the chance for recovery...so the road, although long and hard, is very welcomed!

Thank you CJ! We're keeping you guys in our prayers too!
 
I've been following your story a little and I am so happy they are moving away from the initial diagnosis. I really hope they will do the surgery and he can work towards regaining even some of his muscle. You really have worked so hard at getting answers.
 
Tracy,

Your story is a very fine example of what fighting for the right answer is all about. I think your doctor is spot-on when he said you can't stop looking for alternatives when it comes to ALS.

I hope the surgeons are successful with saving your husband's legs.

Zaphoon
 
Good news Tracy. Just another example of why I insisted on each Neuro (5) doing their own tests. I didn't want them just rereading someone else's flawed test.

Al
 
Thanks Willow! We hope so too! Jim's so anxious...he's only waiting until Wed of this week to hear from the surgeon's office before he starts calling to check in lol!

Thanks Zaphoon! It really makes you wonder about the misdiagnosis percentage when hunting for answers. How many people may have something that could be treated and don't get help. In our case..Jim wouldn't have lost his life...but he would have (still could if we don't get surgery) ended up as a paraplegic with life long bowel/bladder/sexual disfunction. It just didn't feel right that we were diagnosed in an hour and a half and were told that other testing was un-necessary because this dr was certain!

Thanks Al! I keep saying that I'd love to lobby for legislation that allows patients to sign off on their clinical exam notes before they're entered in their files...I don't know how it could happen...but SO MANY of ours were mis-represented to the point of feeling like our stories were TWISTED to support the doctor's diagnosis...not to make an accurate diagnosis. It's frightening! You feel like they either don't listen or they just hear what they want to hear and to have that perpetuated from doctor to doctor instead of using a fresh pair of eyes is frustrating!
 
This is the best news of the day! God bless you both ~ You are still in my prayers.
 
Marvelous news! I hope your surgeon gets on top of this right away!
 
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