Back from 1st Neuro Appt

[Military_Wifey]

Hi all,
I am back from my first visit with a neurologist at the University here who happens to specialize in MS and neuroimmunology. He was nice and humorous! (I know, strange for a neuro doc LOL). He said my pain doc should never have told me a diagnosis of MS over the phone and I must be so scared. He reviewed the MRI cd and took my history himself. He said he can see from my MRI why they said MS. He said it's not likely to be anything else based on the lesions but he would like to test me anyway to be sure.

He ordered blood work to rule out mimics including vitamin deficiencies and had the bloodwork drawn right there. He also wanted a lumbar puncture (*#!!*&!!) :-(     I asked if there was any merit to redoing the brain and spine MRI on tesla 3 machine. He was glad I suggested it. He said there was no need to redo the brain since there were so many lesions before Gd, but he wanted the spine redone because the report didn't mention any lesions on c-spine but he thought he saw lesions there. He is also seeing me back in 2 weeks! He told me if it's MS not to panic because there are good meds out there and not everyone becomes severely effected immediately.

He didn't do or order any evoked potential testing and as for the neuro exam....he scraped my feet with something and asked me to follow his finger, and then he touched me all over my face and asked if I could feel it equally. He reiterated to my husband that it is not likely it will be anything but MS. I guess I like him since he was nice and willing to do any test as well as see me back quickly. I still don't feel better as I am not much closer to knowing what it is going on, but hopefully when I go back in 2 weeks with all the results it will be final.

He called it a puzzle and said he thinks from the pieces he has it will turn out to be a MS puzzle but it's not fair to say until we have more pieces. He seems like if it is MS he will be proactive with med treatment, he mentioned them several times. I guess I was hoping to go in and have him say there was some mistake and the lesions weren't mine. LOL. But when he said it wasn't likely to be a mimic and that he thought he saw lesions on my spine....I guess I have to wait for the two weeks. Any advice for the LP? He said it will be under ct guidance and they will numb me up well.He promised it would not be an intern. :-)   I am terrified of needles!

-Dee

[Military_Wifey]

Thanks for the support and feedback.Lulu I'm going to read your post on LP now. Thanks guys!   :-)

-Dee

[Lulu54]

Hi Dee,
I am so glad the University clinic got you in fast - but it stinks that the doctor couldn't indulge your fantasy and tell you that its anything other than MS.  

You and your husband should take some time to reconcile your emotions with the idea of living with this disease, it takes all of us some time to put it into perspective.

There are a  lot of tests, like the evoked potentials, which just don't have to be done in the face of all the other evidence.

I wrote about my lp here a while back - here's the link - I trust knowing what to expect will help

http://www.medhelp.org/user_journals/show/42150?personal_page_id=5829


See you around,
Lulu

[Amyloo]

Hi,  I will just add that an LP does not rule out lyme, as it is only reported to be10-20% accurate in being able to pick up lyme dna.  It's like trying to suck golf balls out of a swimming pool; the golf balls may be in the pool, but the chances of getting one are slim.  

[Military_Wifey]

Thanks for responding. I feel comfortable with him. I hate needles...hence the dread of spinal tap but I agree it is a piece and I am glad he is being thorough. I also am glad he doesn't seem scared to be proactive with meds if necessary. Thanks for the well wishes. Two more weeks! LOL. So Julie, the spinal isn't too bad?

-Dee

[hbananas]

One of the mimics the LP will help rule out is Lyme disease, since they run the test for it on your spinal fluid.

[Sarahsmom46]

This doctor is on the ball and is doing and saying exactly what any caring, compassionate, and competant doctor should say and do for a patient.  

He's right about not needing to redo the brain MRI.  The spine is more tricky and doing on a 3T will give him a much better picture about whether what he saw on the other MRI is a lesion or something else.  Again, good guy.  

The LP, most of us have had one or even more, is a wise decision if he feels it will help piece this puzzle together.  I think it would also help you know that everything was done and tested so when you do get the diagnosis that there is not doubt abut the findings.  Of course, you don't have to have an LP if the other data and exam are ponting to MS, but again it is another very helpful tool in the diagnosis process.    I had my first LP under flouroscopy and it went fine.  I hope yours goes just as well.  Do you have the LP scheduled yet?

I am sorry to hear that you look like you're going to get an MS diagnosis, but like you doctor said there are medications out there that will help keep things in check, so its a negative yet positive news to get.  

Take care and thanks for sharing your news.

Julie