MS Specialist Appt update

[raekay35]

Hello...Update on appt today with UCSF MS Center...Probable MS, is putting me on a medication for my tremors but can't remember the name of it, its' an antiepileptic med...He says that although my brain MRI shows several lesions there are not enough, even though they are in the typical MS locations.  Also, I have positive O bands and at least 2 seperate incidences of symptoms...He wants to wait at least 6 months before saying it is definitive/positive MS.  He doesn't want to start me DMD for at least 6 months, wants to be sure that's what it is...So another MRI in May and an appt with him then.  Keeping my fingers crossed I will get an answer one way or the other...If anyone has any thoughts on this subject I welcome them.

[rendean]

Why is he waiting the 6 months??? It sounds like you meet all the criteria, except your neuro is obviously a lesion counter. I only have  2 in the "usual MS locations" and I received a dx based on symptoms  and history.
According to what you just posted (sorry I don't recall your previous posts and their info) you should have a dx and be started on a DMD now.

My two cents worth,
Ren

[Wobbly]

this sounds weird to me??  not sure why he/she is waiting??  Sounds like you should be starting something now??  

maybe ask for a second opinion, do you have a copy of the CD MRI and report?  etc..

let us know how things go..

wobbly
dx

[raekay35]

Thank you for your comments.  I don't know why he is waiting.  It was an extremely long appt and he got an opinion from one of the other MS Specialists about one of my lesions that is close to the area that is affected during Parkinson's disease.  He was concerned because I have a severe tremor of my right hand.  He didn't say whether my neuro exam was normal or not.  I don't know, I really wished I knew one way or the other.  I have a copy of the MRI and report and he actually pointed out more lesions on there than what the radiologist saw (the radiologist saw approx 7) one of them being 8mm and the next largest being 4mm.  I don't know, just very frustrating.  Right now as long as I can get help with tremor, I can pretty much deal with the other symptoms right now, so have to wait for PCP to write the RX.  Thank you again for responding.

[mayperl]

another opinion.  I'm a recently dx relapse-remitting ms-er.  I lost vision in my right eye on 11/10th.  The gen phys sent me to an eye vision specialist, who then sent me to the eye foundation hospital after not seeing anything obvious.  The neurologist there requested an immediate MRI.  By 1pm I had a prescription for methlyprednisolone, and prednisone for optic neuritis and was sitting in the MRI clinic.  By 5pm the neurologist called me with the results saying the test was indicitive of MS.  I only have 4 lesions, but they were all active at the time of the test, so the contrast was easy to identify.

My results were sent to two other MS SPecialist to confirm diagnosis and both concurred.  They said it is undeniable.  They were all comfortable DX-ing me with the optic neuritis and the MRI results.  Since then, I've been journaling all my symptoms that I've had a while, but dismissed as "getting older".  Now, it all makes sense.

If I were in your shoes... I would not wait for further progression or worsening attacks.  I would be insisting we try other tests, a spinal tap, another MRI... another Dr.!  Tremors aren't normal, and neither are lesions on the brain, regardless of size and amount.

Best of luck to you!
-Mayperl

[raekay35]

Thank you for your comments...I've had a Spinal which showed greater than 5 O-bands, have at least 7 lesions in brain, none in cervical or thoracic MRI's.  Symptoms this time started in July/Aug and have been getting worse, with no lapse in symptoms.  I listed everything I could think of over the last 5 years regardless if they were symptoms or not in my mind, which I always dismissed as stress related.  He said that I have met all the criteria for MS dx but wants to want to positively dx me until May when I have another MRI and see him again.  I would really like another opinion but the cost of all these tests and office visits are out of this world.  I have to go to an eye specialist as soon as possible, which won't be until January when my vision insurance kicks in, because the Neuro said that he thinks I have something going on in my right eye.  I was dx with Narrow Angle Anterior Chamber about 6-7 years ago, so don't know if that is really what it is or something having to do with MS.  I'll try to figure something out and if I have to wait a little longer so be it, its already been 5 months so 6 more months isn't that much longer to wait.  Rather be sure then jump to conclusions, but would also like to know for sure sooner than later.  Thanks so much for responding!!! :)

[Lulu54]

My gosh, what was this doctor doing when they taught the McDonald criteria in med school ?  You have enough going on that there is no excuse to not start you on a DMD.  This neuro could call it a clinicallly isolated syndrome and begin the drugs if this doc doesn't have the kahunas to call it real MS.

You made all that effort and now you are back to waiting.  I'm so sorry - next time maybe you need to scoot over to Reno instead of making the trek over those mountains to see this doc.

Take care and get on those meds that are rx'd.  I hope it helps with the tremor.

shaking my head,
Lulu

[Guitar_grrrl]

I'm with Lu on this one.  You're better off with the folks in Reno or even Sact'o.  I'm surprised the UCSF folks treated you this way, though I've heard mixed opinions.  My own neuro diagnosed me without sending me to either Stanford or UCSF.

As has been said on this forum in the past, "if it looks like a duck, quacks like a duck..."
Cajones, indeed!

Just my $0.02,
Guitar_grrrl

[raekay35]

Thought I would let you all know, I have an appt with a Neuro from Carson City this Friday.  Dr. Lagios...I don't like stepping on toes of doctors but feel like something more needs to be done and soon.  If he gives me the same answer as the first then I guess  I will have to wait another 6 months and play their limboland game.  I will let you all know what transpires from this appt.  Thank you all again for your help and guidance.  

[Geekboy]

I am glad you made another appointment. I was diagnosed in August of this year but was told I probably had MS in January. I started to have numbness and electric shock feelings in June but my Neurologist said he didn't think it was MS and referred me to my PCP.

Well it was MS. My PCP gave me arthritis medication which did nothing for me. In August I had a major attack and collapsed in the street. All of the muscles on my left side of my body spasmed. It was very painful and frightening.

I believe the if I were diagnosed in June and had steroid treatments I would not have had to suffer that painful attack.

I have found that talking to your doctor is critical and difficult. My Neurologist tells me all kinds of good news and I believe him no matter what I know about what I am feeling. We all want good news but we have to look out for ourselves. I always went away from appointments with more questions than answers because when I was there I was so frightened that I couldn't think of the questions I should ask. Now I try to not go to my appointments alone and I write down everything I can think of about my symptoms and questions that I have days before my appointment.

You are doing the right thing. You can't let the Dr's feelings get in the way of your health.

[jensequitur]

It's so hard to be your own patient advocate.  It seems like people with MS have to work even harder to make sure we get the proper care, which is just ridiculous.

[Karen99]

raekay is going to the neurologist that diagnosed me and took extraordinary care of me until I moved out of state.  He is the best and I will forever be grateful.  

He will take good care of her.  

[Ufrustrated2]

i did that, that is, not step on their toes, was respectful, did what they told me, and who in the long run paid the price for that? me & no one else.

you will too if you don't advocate and push for yourself. that is what the medical biz has forced us all to do. none of us like it but that is simply the way it is.

just keep pushing in a "respectful" way, and get the treatment your body is telling you you need.

wait? with your test results?

i would be interested in your experience with Dr. Lagios. feel free to text me a priv msg regarding that.

best of luck and with your new doctor.

[raekay35]

Thank you again to all of you who commented.  I was in the medical field myself as a nurse several years ago and got out of it because of the lack of compassion and care of the doctors I worked for. I know all to well how difficult it can be to have someone actually take the time to listen to you.  Now since my appt with UCSF MS Center my husband thinks I am making everything up and that nothing is wrong with me, so now no support on the home front.  He doesn't know about this appointment tomorrow, going by myself.  I want someone to take me as seriously as my PCP did, when all this first started.  Yet, I'm still VERY apprehensive about how this doctor will react knowing I was just seen by a so called MS Specialist!  
I will definately let you all know how this turns out for me.  Thank you again!!!

[Karen99]

This neuro is a big boy and can deal with it.  Trust me on that.  :-)

[Wobbly]

How did it go?  Let us know when you can... hope your well, we know how things can get crazy at this point..
hang in there

wobbly

[raekay35]

Well, back from the 2nd Neuro, still not confimed, going to have an EEQ, and evoked potentials before year end.  Started me on Mysoline for my tremors, said that the neuro exam was a little off on the right side but nothing that would definitively confirm dx.  Wants to see me back on Jan 20.  No steroids or DMD's.  I'm ok with all this, I guess.  I just get the feeling that the docs think I'm a basket case.  Glad though that at least he ordered the evoked potential tests and want me to see a Neuro-opthalmologist after the EVP's.  I really liked him and will definately keep him as my primary Neuro doc.  He too would like me to continue care with UCSF MS Center in 6 months as well.  I just felt like a lab rat there and didn't feel like I was taken seriously.  So that's the update, Thanks Karen for recommending him to me!!!  Going through alot of difficult times right now, not just this probable MS crap but life in general, hope it ends soon.  Thank you all again for your support and advise I greatly appreciate it,

[Karen99]

Hmmm.  There is a reason he is withholding the MS diagnosis, just yet.  The good news is he is close and will be there if you need him.  

See where you are in 6 months, then decide about going back to UCSF.  You should have this sorted out by then.  Perhaps he is being diplomatic to suggest you return there?  

This particular neurologist has a lot of experience under his belt.  He will continue to do right by you.  

Having physical problems and life in general can make us "basket cases."  It happens to the best of us.  :-)