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Pretending I never went to the neuro.....

Jan 14, 2008 - 3 comments

So I thought that maybe this time I'd break the pattern of a meltdown after each appt. with my neuro. This time was going to be different. For one, I wasn't waiting on any test results. And two, he had previously told me that if things had not improved by our next visit that he was going to send for bloodwork for Lyme's Disease, another T-2 weighted MRI, and possibly an LP.

I felt good going in there. My symptoms have become worse. I have been following the word of my neuro taking supplements, B-1, high B-12 (even though my B's came back normal in my bloodwork), Omega 3, Coenzyme-Q, Magnesium, Vitamin C and a multi-vitamin. Not the biggest collection of pills, nor are they hard to take. But the doc said to do it, so I do it.  So I felt good going in there. I felt like I had developed some trust in this doc, and that he was actually listening to me.

Boy was I wrong. Even though both he and my chiro have noted increased weakness in my strength tests, decreased reflexes, etc. Numbness, fatigue, vision jumping, have all become worse.My neuro told me that it's all anxiety. He would also like to send me in for an overnight sleep study. I asked about having a Lyme Disease test done and would like to have the Western blot done...he told me that without the bulls-eye it is impossible to have Lyme (i know otherwise.) I asked him for that other MRI he told me about (which he SOLD it to me last time, describing that it is a bit stronger than the last T-2 I got and would pick up lesions that didn't show up on the last one). He told me that even if I got another MRI there would be no lesions. I reminded him that 4 months had past and asked his reasoning for denying all of these tests.

"They're expensive." he replied. .....(I think that this was my boiling point.)

I reminded him that it was MY pocket book and not his. That my husband and I are willing to continue racking up the medical bills in our search for an answer. (We pay out the butt for good insurance ....and we are going to use it.) He also mentioned that it was expensive for the insurance companies and that he likes to try all possible angles before ordering more tests. (great to know that it's about the insurance companies and not the patient..isn't it?)
Mr. Doc sir smarty-pants Neuro dude must know his stuff though.... didn't change the fact that I was pissed...

It is SO frustrating to be on a quest to find answers and to have a neuro on a pig-headed glory trip.

I usually hold it together until I hear my husbands voice over the phone. This time he was anticipating news of new tests and maybe even some answers as to whats going on. What he got on the receiver when I called was nothing short of a blubbering-screaming tear-filled fury.

But that's okay. I am pretending that I never went. I'm pretending that I never saw him that day. I have a 2nd opinion MS specialist that I am going to see on 06 February. And we'll go from there.  

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by Sunny602, Jan 14, 2008
I have found that neuros are the worst as far as being quick to chalk problems up as anxiety. I know...I have been through your nightmare a good 4 times until I found a neuro who listened and didn't judge me because he could not understand fully what was going on with me. Now..he has retired and I have to resume the search for a new one *sigh*. I have even been accused of Munchausen's at one time by one idiotic doctor...okay, I live on a ventilator, have little function of my diaphragm and have other muscle problems. Now I ask, how the hell can you "fake" a respiratory problem to the point of having to be placed on a vent??? You actually have to FAIL some tests to earn the priveledge to use that machine...GAhhh...sometimes I just want to take my powerchair and accidentally "nudge" a doctor with it!!! Fortunately these days, most doctors that accused me of being nuts in the past hang their heads in shame when they see the way I am a wheelchair and vent dependent.

I am sorry that you are going though this with your is interesting how he told you one thing and then did a 180 on you. The problem with alot of neuro issues is that symptoms are 'subjective' such as pain or feelings of numbness. It can't be proved by tests, a person describes the symptoms and the doctor either dismisses them or accepts them. A good doctor will try and sort things out before jumping to conclusions. They must also admit that they don't know every little detail regarding the human body...that they don't understand every biochemical reaction that takes place in the trillions of cells that we have. As far as neurology goes, that field is in its infancy..there is just so much yet to be discovered. If you get a doctor who admits to not being all knowing and has an open mind, then you have a good doc in your corner.

As far as your neuro saying that because you did not have the bull's eye rash you possibly could not have Lyme's, that is just crazy! Just where did he get his degree from? From what I have read from the CDC site, up to 40% of those with Lyme's do not get the classic bull's eye rash. Is he going to do the Western Blot on you? I hope so...I can't tell you how many neuro problems are from Lyme's. My nephew and niece are great examples. Their doctors sat on it for so long that they have permanent damage..especially my poor niece.

I have had a sleep study done, they aren't too bad...except that I got twirled up like spaghetti on a fork in the wires. They put EKG leads on to monitor your heart, EEG leads on your head, a pulse oximetry probe on your fingers, wires on your legs to monitor how much your legs move as well as a device to measure depth of breathing and apneic episodes. They ask you to try and sleep as normally as you can. Pffft!! How can you do that with all of these contraptions on you? It does tell the doc alot of things though...I did have sleep apnea because of my failing diaphragm at the time and required BiPAP which made a huge difference in the way I felt. I was on O2 at the time too. I hope that your test goes well...

I am glad that you are getting a second opinion...I hope that in time you will get answers to all that is happening to you. Don't give up the search..Sunny

Avatar universal
by FJOHNONE, Jan 16, 2008
Keep you focus. On the target. Doctors, money and the such get in the way but they can't make you lose your focus. Getting your health back. Anger and frustration drain you and you don't need it.
You are young, resilient and dedicated. Plus, your children are watching and feeling this adversity that you are facing. What do you want them to remember when they look back at your struggles?

Avatar universal
by Ley5792, Jan 19, 2008
Good words all around. Thanks all! :o)

My next Neuro appt is not until Feb. 6th, I am thinking that I might call my family doc and see if he won't order some tests.


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