Update on Neuro Appt.

[Sidesteps]

Hi all! I met with my new Neurologist today. I really liked her. The result was kinda what I expected --- more tests and lets see what happens in the coming months since my symptoms are pretty mild at this time.

The good and bad news: She indicated that she felt my MRI was for the most part clean (no blatent lesions) but if it is MS it will eventually show SOMETHING. It seems I had the best neuro-radiologist review my images and he should be well trusted. I have to admit, I'm not convinced a couple of areas on my MRI are not lesions (she also said the same thing in so many words) BUT I understand if those are lesions then they won't "go away" and will eventually fully show themselves, right?

She feels my VEP was "scewy." The wave pattern is all over the place and my left eye shows a reduced latency --- it's faster than it should be which isn't right. She also said she feels she DID see something on my MRI with my optic nerve (it's not enhanced but it's swollen or something) and she wants a clearer picture. She ordered a re-do of my VEP and a enchanced orbit MRI.  She said, IF something comes back inconclusive there she will refer me up to a specialist at Swedish Medical Center. If we can't figure it out, he will, they have special imaging techniques. lol (I wonder if that is the OCT Jens is speaking about.) My vision is so messed up right now... I really don't see how something won't show eventually.

She is requesting I see a Rheumy and has put Fibromyalgia on the table (since many of my symptoms overlap both - except I'm not in pain) and would like to get a Rheumy's thumbprint on my situation. There isn't anything indicating I have inflammation but she wants that crossed off as well. She explained Fibromyalgia a bit to me and just said they have no idea the cause but since I have similar symptoms that needs to be ruled out as well.

She said, at this time, she doesn't feel comfortable saying I have demyelination and doesn't want to treat me for MS. She wants to continue to watch me closely. She wanted me to know that sometimes these tests won't reflect any positive results which is why she is not ordering a spinal tap right now. It's all very subjective depending on different variances. She did say the VEP will show latency permanently if there's that kind of damage but that my test didn't count and there are other forms of damage as well. She is trying to create a clear picture and just keep moving forward...so more tests.... and I was able to get a prescription for my tremor's. At this time, I'm happy with that. I see her follow-up with her in a month after my other tests.

[anon07072023]

I'm glad she said she wants to follow you closely.  I hope they can find a diagnosis - whatever that may be.....

-Kelly

[Sidesteps]

I did learn more today - she mentioned Sarcoid a couple of times but I've been tested for Sarcoid. This prompted a fairly long discussion about how certain tests with MS, Sarcoid and others are subjective and the timing is sometimes important to get the needed results.  

In my examination, I could tell which tests were not fully normal as she repeated them.

It appears I have decreased sensation in the left side of my legs and feet.  

My left side reflexes are jumpy. (I've known that one but they were extremely more so today.) She repeated that about 3 times. lol

I think she saw something in my optic tract when she checked my disc. She left the room, came back to tell me that she saw "something" on my optic nerve but it wasn't enhanced. I think she left to double check her finding with the MRI. My MRI was done about 2 months after the worst of my symptoms.  Would that make a difference in enchancing or non-enhancing? Do you know?

I think I've got a good Neuro. One thing that surprised me thought was she said Monocular Diplopia tends to not be neurological. I explained to her that this all started when I was sick and I've had LASIK so my vision should NOT be doing this. She needs time to get to know me and watch my symptoms. Like you said - LOOK - LISTEN - THINK. I'll give that to her and follow-up with a Rheumy.

[Karen99]

I was wondering how your appointment went.  So glad she is clear and direct with you.  Goes a long was in having confidence, especially with patients like most of use who know a great deal about the possibilities. Hard to get past the BS detector on us!

As Quix has said, this doctor did what all should:  LOOK, LISTEN and THINK"

"To all - We all need doctors that LOOK at us, LISTEN to us and THINK.  These are the docs that we can TRUST.  We will recognize these docs when we see them.  Then we need to let them make the diagnostic decisions."

I know there is a large post that deals with look, listen and think but I always have  difficulty finding it.  

Standing ovation for your neuro.  

[Sidesteps]

I am very glad as well. Yes, you both are correct she really did a good job at looking at everything and addressing my concerns but it was really that she was clear with me and direct. I work best with someone who is willing to inform me.

THIS time, I'm going take the medications so I can give her solid feedback if there is improvement or not. She was a little concerned about my blood pressure. It's up again but not terribly so the tremor medicine will treat both my tremor's and the blood pressure issue. I did ask her about the fatigue --- I didn't realize it usually stimulants they give for that. I'm hoping the fatigue will resolve itself but it's been 9 months yet I'm not ready for stimulants.

I'm hoping Bob, sees this... I think he'll find the redo of the VEP to be pretty on target based on something he said to me. I find it interesting she saw something on my MRI. She said it wasn't enhanced but the nerve looked swollen. I can't wait to get these tests done. I'm SOOO tired of my vision issues. I told her that was the priority for me. Figure out my vision!! :)

[MissLauraI]

I agree with DV1. It sounds like she wants to be helpful and isn't just kicking you to the curb when the diagnosis isn't clear. I am glad she will treat you symptomatically. That helps some I think. Sorry to hear you have to keep taking tests. I hope it all leads to a conclusion for you.

[doublevision1]

She sounds very thorough, I think you lucked you and got one of the good ones!