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tag0620

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11/2008
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ut
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park city
Our new neuro had in his notes that a follow up emg was inevitable, but that he probably wouldn't request it until after our next visit on 5/15.

But...today we get a phonecall saying that he's squeezing us in with another dr. for that follow up emg because he wanted it BEFORE our next appt on 5/15.

Now..since our last visit he's gotten a new MRI of that thoracic disc confirming a compressive myelopathy, he's gotten all of our pre-surgical/post-surgical films on the broken back/stenosis/fusion l5-s1, and he's had the results of a vascular study showing no vascular compromise but symptoms (purple foot, cold legs/feet, sensory deficit) consistant with the myelopathy.

We are just FREAKING out because the last time we had an emg done...Jim was diagnosed with als....but....from the last neuro's notes...the emg that he was diagnosed with was not specific on whether his upper limbs showed denervation, or his thoracic paraspinal showed denvervation, or whether both showed something. It did show fibs in the low thoracic paraspinal...but that can be explained by the herniation with the myelopathy.

I guess we just need to keep faith that again..it all started with the ski accident, that he still has spinal cord injuries, and that damning report was not specific...and I know that with both legs with denervation/weakness/atrophy, combined with denervation in the thoracic paraspinal (IF there were no other reason...which there IS) is reason enough to diagnose him...but he has other possible causes and we just have to pray that they find nothing in any other areas...but we're both SCARED!

It's this coming Monday at 12:30pm. Do you think that maybe they see a reason for surgery and they are trying to determine if they can/should do it by getting him in for this emg early?

Please pray for us that they don't find anything that's not explained by his spinal cord injuries.

Tracy
 
Tracy-
I've been following your story, and will be praying about that EMG. Look at it this way, this could be exactly what you guys need to move past this whole ALS thing!

I do know how you feel. . .I just had a follow-up that was normal (wish the normal reading would make my symptoms disappear!), but the waiting, oh, the waiting, and the mind tricks, and the sleeplessness, and. . .well, you know!

Prayers are going up!

Mustang girl
 
Tracy,

Of course, if nothing other than by association, you guys are going to dread this, but, if you trust who is performing the EMG, and if the new neuro either is going to have access to the raw data himself, or trusts who will be writing the report, then its the way to go.

Knowledge is good. Ostrich Head In The Sand Syndrome, not so much. From what your recent appointments have found, I think scheduling the EMG is every reason to hope for quicker action to help him regain the full use of his legs, even if not through surgery yet, at least through an accurate diagnosis as a step in the process.

We'll be here for you, I know if we could, many of us would even show up for his appointment! Please let us know when it is scheduled. ( h u gs ! )
 
Tracy,

I know it can be nervewracking, but I am hopign for the best for you and your husband. You have fought so hard to get where you are. Let's hope the Dr. is as cautiously optimistic as you are, and just covering his bases to be responsible.

Take care,

RObert
 
Tracy ,

Just remember the phrase that should be uttered when the tests begin.

Thank You , may I have another please

or

Ahhh just about perfect , a little to the left please

A little humor will get you through it.

Glen
 
Tracy, I just re-read your post, and caught that the EMG is already scheduled for this upcoming Monday. (sorry about that) again, I hope you're able to turn the looming prospect of another EMG around in your mind, and look at it as an opportunity get a more accurate assessment. That said, I know how much is riding on it and you'll both definitely be in my thoughts!
 
Tracy,

Crossing my fingers that whatever they find is explained by the spinal injuries. I can't even imagine the anxiety/dread you must be feeling to repeat that EMG. But I really believe this time around the story will be different.

Thinking of both of you,

Lydia
 
Mustang..thank you! Jim and I have discussed that this is really the only place where everyone truly "gets it"! I KNOW it's heartfelt when prayers and thoughts are put out there (I know they are from our side towards others as well) and it's one more reason that I'm truly grateful for all of you!

Rose..Thank you! We would have had to do this anyway...it's just that "what if" that freaks us out...I'm hoping this is moving forward in the right direction and that we can get past the als diagnosis and onto our way to repair and rehab...

Thanks Robert..it's what we're hoping too! He's not working out before we go in to hopefully keep the fascics to a minimum...they tend to be much stronger after a workout. I know they're not necessarily what they're looking for in and of themselves...but I'll crush a valium into his protein shake if it'll help any false positives..jk

Glen..sick and wrong..but you're right..our senses of humor have suffered with this diagnosis and we need to find them again...that's another reason I love you guys and find you such inspirations!

Thank you lydia! I'm hoping the story has a better ending that what we were originally told.

Hugs to all!
Tracy
 
Jim says he's going to cancel the emg

The neuro's assistant called today because she needed to advise us that our insurance probably would NOT cover this new emg and the cost is $1200.00 :shock:

When I asked why they probably wouldn't cover it...she told me that they'd probably deem it unnecessary because it's the exact same test that was done in Nov.

The way that Jim's looking at this is...why should we have to go through the emotional stress, the physical pain, and pay $1200.00 out of pocket because the original neuro hastily diagnosed him terminal without being specific on his emg report, ignoring spinal cord injuries...all while having tests confirm a spinal myelopathy with symptoms characteristic of the myelopathy and the other symptoms consistant with the broken back/stenosis?!?! Especially if insurance would deem it unnecessary and the Dr's know that in advance!

He feels that we got into this mess in the first place by not questioning the Dr.s and by getting sent to an als specialist without knowing he was an als specialist (be careful what dr. you go to...'cause that's what you'll probably have lol). He now wants to talk to the DOCTOR before he has any more testing done...NOT his assistant! We feel like we've been railroaded into this diagnosis and we shouldn't have to fight like this to get his proven injuries fixed!

THIS IS INSANE! :x I am beside myself!

What do you guys think?!?
 
I think it stinks, and you should plan to appeal the decision if that's what the insurance company rules. The assistant said they "probably would." You need to see the denial in writing. It will have information about the appeals process. I was denied a second opinion on my neuro symptoms in '07, and appealed and they reversed it immediately.

These clueless insurance types need to just spend one day in our shoes. I got a denial today for a leg brace. Some fool said it's "not medically necessary." I had six falls in one month before the request was submitted, two of them real head-bangers. I know the insurance is going to pay for the brace ... probably they know it too ... it's just some pissy little bureaucrat probably trying to reach a rejection quota.

Hang in and keep fighting. You are right ... it is insane to put sick people through this idiotcy.

God bless.
 
Thanks Beth..we had to pay $700 for Jim's foot brace because the orthopede wanted to submit it to insurace as "for foot drop due to als " and because we don't think he has als..we don't want insurance to hear that....so that one was out of pocket! What insurance likes to do with those braces btw is cover you for the "shelf" unit and say you don't need one custom fitted to you...so be it if you get blisters, at least you shouldn't trip and fall anymore huh? Good luck on yours...wish you didn't have to wait!

Anyway...Jim doesn't want this emg...if he HAS to he will...but we've had one done and because the neuro wasn't specific (yet diagnosed him) is why they are saying he needs another. We just want his injuries fixed...that in itself will prove more than the emg will. The cost just kind of twists the knife so to speak...ugh!
 
Tracy,

What Insurance do you have? I would call the insurance company myself and see if it is going to be covered.
She said "probably" will be denied. That last emg was 6 months ago. You are entitled to a second opinion and that would consist of an EMG.
 
eat alot of beans or whatever makes you gassy and fart everytime they stick you to hard.

Then look over your shoulder and say... Sorry.. I fart when I experience pain.

hehehe
 
Tag,
I am not sure what another EMG is going to do for you guys, I don't see how you could differentiate the results from what is going on in the lower back. What about the myelogram?
 
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