Well no neck surgery for me. Instead he wants a new nerve conduction test of my arms, neck, AND legs. He mentioned a lumbar spinal tap, too. He is sending me to a special neurologist that specifically deals with people of my particular complications.
I'm exhausted and I'm tired. Just completely tired. This neurologist is the last time.
I just can't keep being sent to doctors who send me to other doctors who send me to other doctors. I'm just tired. This special neurologist better answer my questions or I'm just....done fighting this disability
7
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Feel free to reply to any comment by clicking the "Reply" button.I'm sooooo sorry. I went through two back surgeries and understand how frustrating it can be. I thought my experience was awful but I keep hearing stories much worse than mine.
All I can say is to be your own best advocate. I listened to the doctors - assumed they knew what they were talking about and what they were doing. They don't. Medicine is art as much as science, unfortunately. We are all in different bodies!
Ask around as much as you can to find the best doctors that you have access to. Maybe find support groups would be my advice. Surgery was the best for me (although I got divorced over it but that's a different story). I wish you the best. Pain suckssssss.
Hihi
Level 6
Nov 28, 2018
4
What she said
I'm in a few support groups and talk to a bunch of doctors. I've sent emails of my problems to research clinics and specialists trying to get a direction.
They all ended me up in that neurosurgeons office, and he seems certain his neurologist will be able to help.
The thing is, I've seen 4 pain specialists, a rheumatologist, an oncologist, 2 neurologists, 5 neurosurgeons, a geneticist, and a partridge in a pear tree. I've traveled out of state for some of these, spent hundreds of thousands of dollars. I'm sick. I am not financially able nor emotionally able to just keep going and going and getting the same answers which is "I don't know".
Maybe in your case he's justified to do this due diligence? Because if you think about the concerns that the surgery would bring - maybe if there is a better alternative?
I hope he gave you some sort of idea however. This seems like a hold hell no one should have.
Hang in there.
RavenCT
Level 9
Nov 28, 2018
1
He won't say what he thinks it is, but both mom and I think he has an idea because he had a look that told us he might know. He said he won't say anything one way or another because he's a neurosurgeon not a neurologist, but he trusts the guy hes sending me to. He has a lot of EDS patients, and seemed particularly interested in my legs and my falling. He asked if I'd had a lumbar tap, or had my spinal fluid checked. No one suggested that before.
I'm just immensely frustrated because every time I get hope that this is what it is and this is how itll be fixed, it turns into "I dunno but let's send you here".
I'm so tired. I need to stop working. My mom brought this up today, too. She mentioned it's time for me to stop working so I can enjoy what's left of my life before I'm paralyzed.
She's not wrong. I'm glad she sees that too. It's just so hard.
If this neurology super specialist has no answers, I don't know that I want to keep pursuing answers. Even if what I have has no name, it exists because I have it.
@LadyAlyxandrea Absolute truth even if you are patient zero You have it!
@germangirl90439 @ravenCT the doctor he is referring me to just called. He specializes in MS and ALS. Both of which are diagnoses I'm terrified of.
Fantastic
@LadyAlyxandrea I have to admit MS was what I presumed he was checking for.
A ton of my friends with Fibro have been checked and gone on to new diagnosis.
One with ALS which she doesn't have! So hang in there.
I'm sorry because waiting to be seen and testing is so stressful.
@RavenCT most of the people around me think its MS even though I haven't any lesions. I would rather have MS than ALS, hands down, but still
@LadyAlyxandrea IKR? Gees Lady you could really use a break.
@RavenCT ikr I'm so tired of this BS. but I'd rather know it's MS or ALS at this point
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