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738075 tn?1330575844

UCSF Summary

I saw an MS specialist Wednesday 6/30, and it was relatively quick, but interesting.  She basically wants to do "a little housekeeping", because my diagnosis isn't entirely clear to her (uh, oh...).  I haven't had a brain MRI in 18 months, and my last one wasn't super impressive to her.

If the T and C spine MRIs are still negative, she wants to do a SSEP.  I'm totally for this, and I kind of wonder why my general neuro didn't do this.

She did appreciate my time line, though, and it saved her quite a bit of work.  She used it while taking my history. She did a basic neuro exam, and a timed walk, as well as tandem, heels, toes, etc.

She gave me a lab order for clotting factors other than V (Leiden, which is negative), vit. D, gluten tolerance.  She then asked me to start taking Omega 3 and L-Carnitine suppliments.  The L-Carnitine is supposed to boost my energy a bit.  It acts in the mitochondria, and gives them something other than glucose and fructose to work with.  The Omega 3 is supposed to offer protection to myelin.

She asked me what was the one most important issue I wanted to address.  I told her my muscles - they feel like they're working 24/7, and they're exhausted and weak.

The plan:
Repeat MRIs.
SSEP if spinal MRIs are negative.
Adjust meds from there, including the addition of the active ingredient in Ampyra.  I don't qualify for Ampyra: my walking time is too good.  But she says the active ingredient should give my muscles a boost.  I can get that at a compounding pharmacy.

Have a great weekend.
Guitar_grrrl
10 Responses
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620048 tn?1358018235
I think that is an excellent idea..wish I could do that with my pulmonolgist...

Dr C is wonderful, i trusted her from the get-go and go my diagnosis in 4 mo, from start to finish.  She. is very thorough but very busy...so I look forward to our visits

My cardio fell in love with her..he called her to talk with her anout my heart valve problem for some reason...can't recall.

meg
Helpful - 0
572651 tn?1530999357
GG, getting a second opinion must take a lot of courage. I've been mulling over that thought myself but am not sure I want to jump inot that pool.

Your new neuro sounds on the ball - she is approaching this in a logical way and doing exactly what you went to her for.... an objective fresh look.

be well, Lulu
Helpful - 0
293157 tn?1285873439
Hi there..  please let us know how thing progress.  I'm glad you got someone that will find out more information for you.

take care
wobbly
Helpful - 0
738075 tn?1330575844
I sought a 2nd opinion just because I wanted more than one brain looking at this.  My regular neuro is 76, has seen it all, and has all that wisdom that comes with years of experience.  I'm not sure he's completely up on all his reading, though.  Dr. C is young, sharp, and up on all the latest research.  I figure the combination of the two is hopefully a good thing.  We'll see...
Helpful - 0
620048 tn?1358018235
I am not quite sure why you went to her, i guess I missed it, becuase you are already diagnosed..  I went to her for a diagnosis.. Probably she just needs to get it all straightend out in her mind instaed of just accepting someones elses diagnosis.

what do i know, i am goofy today...

hugs, meg
Helpful - 0
738075 tn?1330575844
It's funny, I felt a little defensive when I got home.  I felt like she questioned my diagnosis.  As a couple of days passed by, I understood more, that it really IS a matter of "housekeeping", and that she really IS pulling for me.  

Just trying to keep my mind open...
Helpful - 0
620048 tn?1358018235
Hi Sweetie,

You saw my wonderful DR ??? She is very good ...I am happy you are in good hands.

I go in on Friday and will find out how I am doing now.  I had my mri's and had to wait awhile to get in to see her.

hugs, meg
Helpful - 0
Avatar universal
Wow I was there the day before you.  Too bad we didn't know we coulda had lunch :)
I liked it there.  They seem to be very thorough.  I was able to get in with Dr Cree so I saw an intern who did my history and an exam, then the Dr.

I already have a dx so they were looking to see if other things could be makinng my sx's worse. I did all the same tests it seems like and left them 7 vials of blood.

I hope you find some well deserved aswers from your visit.

D
Helpful - 0
559187 tn?1330782856
The neuro you saw seems so proactive.  It is amazing to hear her suggesting supplements instead of handing over scripts for drugs.  I am impressed with UCSF for having forward thinking doctors.

So, she has recommended a spinal MRI.  Don't be surprised if the results come back normal as Quix tells us all the time that lesions in the spine can be tricky to see on MRI.  

You are also going for an SSEP, hopefully.  It could very well pick up some abnormal activity.  I have had it twice and although it was a bit long and just a little uncomfortable, it was worthwhilie.

Thank you so much  for sharing this experience and information with us.  It is wonderful how much we learn from each other. There's no other group like this in the world.  

Take care and have a nice holiday whatever your plans.  

Julie
Helpful - 0
645390 tn?1338555377
Sounds like she is being thorough, which I don't think anything is wrong with that. Always good to get a good check.

Interesting about the Omega 3. I was going to ask my Vascular doc about that soon, I was curious if I could take that. (I am on Coumadin for a blood clotting disorder), but have been hearing so much good about Omega 3. Interesting, thanks. Overall, sounds like you had a good appointment.

Have a good weekend,
Michelle
Helpful - 0
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