Neurologist

[Guest guest]

Just a curious question, has anyone had their neurologist tell you that after

almost a year you were diagnosed, he does not understand why one is still having

symptoms when the last MRI never showed anything?

[Guest guest]

I've not had that happen because I hit the jackpot with my neurologist. But so many doctors, including neuros, are uninformed about NS & the ways that it manifests itself. For instance, Dr. Baughman in Cincinnati, one of the world's top sarc docs, told me that sarc especially likes the cranial nerves, but that it is very difficult to find lesions on MRI, even when specifically looking for them. He said they did a study of patients with known sarc & 7th nerve palsy (Bell's palsy) & rarely could they find evidence of it on MRI. Baughman has published a ton of stuff on sarc, including NS. It's a shame that more doctors, especially neurologists, don't read their own literature.

Ramblin' RoseModerator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

> To: Neurosarcoidosis > Date: Tue, 31 Aug 2010 16:01:20 +0000> Subject: Neurologist> > Just a curious question, has anyone had their neurologist tell you that after almost a year you were diagnosed, he does not understand why one is still having symptoms when the last MRI never showed anything?> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

My neuro told me he couldn't understand why I got so sick so quickly after

stopping imuran, that was really annoying.

But on the MRIs he has found things that the mri doctor didn't.

He has also admitted to not knowing enough about NS but we are just working

together trying to have a good quality of life.

If your neuro is ignoring your symptoms as a result, it's time to find a new

neuro.

>

> Just a curious question, has anyone had their neurologist tell you that after

almost a year you were diagnosed, he does not understand why one is still having

symptoms when the last MRI never showed anything?

>

[Guest guest]

No, but I would fire his fli;ppin behind. Remember you pay his salary, he doesn't pay yours.

To: Neurosarcoidosis Sent: Tue, August 31, 2010 9:01:20 AMSubject: Neurologist

Just a curious question, has anyone had their neurologist tell you that after almost a year you were diagnosed, he does not understand why one is still having symptoms when the last MRI never showed anything?

[Guest guest]

NO Connie exactly the opposite happened to me, my Neuro told me that even though my MRI showed nothing, he could tell me by my symptoms where he believed the granulomas were, base of brain, and down the spinal cord, he said he only did the MRI to rule out

MS, as you know the treatments are different.  He examined me, and said right away that I have NS without a doubt after the MRI didn't show MS.  he said the granulomas are so small it's hard to see them on an MRI. 

He told my other doctor and wrote a letter to the Insurance Co. (as were fighting them for Remicade) to get me on the Remicade ASAP,  as the more mobility I lose, the harder to get it back.  Then he told me, keep using everything you can, because if you don't use it, you will lose it.

Sorry got carried away there, happens everytime. Blessings, Marla  

 

Just a curious question, has anyone had their neurologist tell you that after almost a year you were diagnosed, he does not understand why one is still having symptoms when the last MRI never showed anything?

[Guest guest]

Marla, you explained it beautifully. Again, you need a doctor who knows the art of medicine, not just the science. So many docs just rely on technology, whether blood tests, xrays, CTs, etc. And you've got a ways to go to catch Ramblin' Rose!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Sun, 5 Sep 2010 13:49:00 -0600Subject: Re: Neurologist

NO Connie exactly the opposite happened to me, my Neuro told me that even though my MRI showed nothing, he could tell me by my symptoms where he believed the granulomas were, base of brain, and down the spinal cord, he said he only did the MRI to rule out MS, as you know the treatments are different. He examined me, and said right away that I have NS without a doubt after the MRI didn't show MS. he said the granulomas are so small it's hard to see them on an MRI. He told my other doctor and wrote a letter to the Insurance Co. (as were fighting them for Remicade) to get me on the Remicade ASAP, as the more mobility I lose, the harder to get it back. Then he told me, keep using everything you can, because if you don't use it, you will lose it. Sorry got carried away there, happens everytime. Blessings, Marla

Just a curious question, has anyone had their neurologist tell you that after almost a year you were diagnosed, he does not understand why one is still having symptoms when the last MRI never showed anything?

[Guest guest]

That is really good to know, ryan ask the question but I needed the answer. I can not have MRI's due to my pacer, but there have been times my beasties were busy and I know CT's don't pick them up worth a flip.

To: Neurosarcoidosis Sent: Sun, September 5, 2010 12:49:00 PMSubject: Re: Neurologist

NO Connie exactly the opposite happened to me, my Neuro told me that even though my MRI showed nothing, he could tell me by my symptoms where he believed the granulomas were, base of brain, and down the spinal cord, he said he only did the MRI to rule out MS, as you know the treatments are different. He examined me, and said right away that I have NS without a doubt after the MRI didn't show MS. he said the granulomas are so small it's hard to see them on an MRI. He told my other doctor and wrote a letter to the Insurance Co. (as were fighting them for Remicade) to get me on the Remicade ASAP, as the more mobility I lose, the harder to get it back. Then he told me, keep using everything you can, because if you don't use it, you will lose it. Sorry got carried away there, happens everytime. Blessings, Marla

Just a curious question, has anyone had their neurologist tell you that after almost a year you were diagnosed, he does not understand why one is still having symptoms when the last MRI never showed anything?