Visit with Dr. Lublin

Greetings all,
Today I saw Dr Fred Lublin at the Corine Goldsmith Dickinson Center for Mutiple Sclerosis. First, before I go into the examination by Dr. Lublin I will say that I wish I would have come here first rather than seeing other my Neuros. The place is setup quite nice and there are ten or so MS specialists there and their assistants.  Now as to my experience with Dr. Lublin. After collecting my medical records and MRI films his assistant went through my time line of symptoms with me and did a complete Neurological exam. After the exam she then went in and reveiwed with Dr.Lublin. Dr. Lublin did his own exam and looked over some of my test results. The verdict was that he didn't see enough in my symptoms or test to suggest MS. He said he thought my symptoms may not be related to each other. He just said I would have to wait and see if more symptoms develop and take another MRI if that happened. He said I should not have MS on my mind as a cause of my symptoms. I asked him if I should have a VEP test and he said that it would not change his opinion about my case.

I would reccomend  Dr. Lublin and the center and especially if you have a confirmed Dx of MS.

So, it is very good news for me that an expert in the field doesn''t beleive I have MS. I just don't feel like jumping for joy because I still don't have the answers to what is causing my various symptoms. So looks like I will have to investigate other avenues, but I will still have keep my eye out  to see if  more MS like symptoms show up.

Thanks to Quix, sllowe and others for your help, prayers and encouragement. I will still be intouch here because I have a very good friend who has MS and I pass all the good info I find here on to him.

You all are a such very special group of caring people. Quix, you have a heart of platinum because gold is not precious enough to value your worth here.

Best wishes and thanks to all, Rick

[JonM]

Good for you Rick, hope all your news is good news !!

Jon

[sllowe]

Hi Rick,

Thank you so much for sharing your experience w/Lubin! It's so nice to hear the excitement in your words. I'm very happy that you can rule this out for now and have that feeling of "certainty" in your mind - it brings so much peace.  

Don't stop digging for answers to your symptoms.  I wish you nothing but the best, and hope you stay w/us here on the board!

SL

[Momzilla]

I'm glad you had a good experience, and that you had a kind doctor.  

Thanks for sharing it with us.  Don't leave us!  We want to know how you are.  You're such a vital part of this forum, and we don't want to lose you!

Take care, Rick!

Momzilla*

[kitten o]

GREAT NEWS FOR YOU , I WISH YOU THE BEST   GOD BLESS KITTEN

[Quixotic1]

That really is very good news.  You really don't want MS, but I know how badly you want an answer to what you have had going on.  Did he give you any ideas about some of the different things which may be conspiring to make you feel so crummy?  Will you be following up with him or only on as "as needed" basis?

I do hope you stay around for our enjoyment and to help with other people as they arrive, like you have been.  When you see someone as knowledgable as Dr. Lublin and spend that long with them you learn a lot about what they look for and what is important to them in making the diagnosis.  Sharing that with us would be wonderful - in addition to your sparkling personality, of course!

And thank you for that nicest compliment.  It touched me deeply.  My best to you, Quix

[Ramraji]

Thanks Quix,

I will be sticking around here because the people on this board have really helped me so much. I will try to help out as much as I can from what I've learned about MS. I have my whole family talking and learning about it these days.

What I liked about Dr. Lublin is that he really seems very confident in what he know's about MS. I don't know all the medical terminology for the examinations he perfomed on me, but I will describe them and maybe you can tell what is what. First the checked my vital signs, then it was the Gait test where I walked a marked out distance and timed. I did that twice. Then I gave the medical history and time line of symptoms. Then his assistant did a Neurological eye exam, Cranial nerves exam, Motor exam, Cerebellar exam, Sensory exam and Reflex exam. DR. Lublin repeated some of the exams like the the point to point movements and checking to see the color recognition in both eye changed. He also did the Plantar Response or Babinski test and some sensory tests ( stuck me with a shap pin on my legs). I thought it was the most thorough Nuerologic exam I have had so far. After reviewing my tests results  eapecially the three MRI's of the Brain that I have had and along with the Thorasic and C-spine MRI's  along with my symptom history he concluded that he did not see MS as the cause. He said he would not treat someone like me with DMD's. He didn't give me any other reccomendation as to where I should begin my new search other than to see a Infectious Disease specialist because of my positive IgM Western Blot for Lyme because he sisn't know what to make of that. I did ask his assistant as what do they look for in making a Dx of MS and she said the MRI was a very important part because they want to see some kind of white matter disease or plaques on the MRI.

Here is a link that tells you what a Neurological exam should consist of. Too bad I just came across it today, but I think it is helpful to check it out before you see a Dr.

http://missinglink.ucsf.edu/lm/IDS_104_neuro_exam/NeuroExam.html

So I guess I don't have MS or I'm one of the few who have it and have a clear MRI. So I'll have to wait and see if thing change one way or the other.

Hope this helps, Rick

[Quixotic1]

Thanks for the link on the neuro exam.  I know what I was taught and I know what my neuro does, but I was hoping to find it all in one place.  I'll look at the link.  I'm glad you're sticking around.  Quix

[sllowe]

Re: The Neuro Exam,

   I found this one to be pretty thorough too.

http://www.neuroexam.com/content.php?p=2

[Ramraji]

Thanks for your support! I appreciate your saying that I'm a vital part here, but i'm just a pinky compared to you! I really appreciate your sharing your experiences and your williness to welcome and help the people who visit here. I think your one of the pillars here and that's why people come back here.

Thanks again, and all the best to you as well, Rick

[Ramraji]

Thanks Jon, Ditto for you as well. Rick

[Ramraji]

I know I said thanks to you but I will say it again Thanks!

[Ramraji]

Thanks and God Bless you as well Kitten. I hope things will be  better for you as well.

Rick

[tory2457]

Rick,

I'm glad you also liked your Neurologist. I don't know your story so I apologize in advance.

I did however notice your doctor's name.

Dr Fred L was my doctor who diagnosed me. Your exam/visit sounds just what I was used to. He and his partner at the time didn't diagnose me immediately either. They were the drs that said Spinal Taps aren't a sure fire way to diagnose MS. With only symptoms and no testing (at my 1st appt) they gave me steroids to calm down the Nystagmus and other things I had. Numbness, brain fog, and a bit of L'hermittes. They told my family the were "suspious" it could be MS but would prefer to do a wait and see approach.

At the time, I was grateful for that approach--obviously. It's scary to consider having this horrible disease, and for me I just turned 30.

Anyway, 3 yrs later I was back in his office with loss of coordination, numbness, tingles, Trigeminal Neuralgia and he sent me for both MRI's and CT scans( to rule out a brain tumor)...testing revealed lesions in both my brain and cervical spine--so he then diagnosed me with MS.

Back then having pain with MS wasn't a solid connection. Dr L didn't think the 2 were related. Years later, as I continued with TN the "term" TN was used and I was given Neurontin to help with the pain.

I now am treating my MS with antibiotics because I have Lyme Disease.

I posted under your thread to put credibility in my doctor and my MS diagnosis--it's been stated here that some questioned my diagnosis of MS.

I wish you well in finding answers about your health.
tory

[Momzilla]

I'm so glad to hear you're staying, Rick.  That link was great.  Your doctor sounds fantastic.  It will be good to have him if you should ever need someone to follow up.  My neuro gave me a really thorough neuro exam, as well, I thought.  The one thing you talked about that my doc didn't do was color recognition.  That's really interesting.  I know that can be an issue with neuro problems.

Talk to you soon.  Maybe we can come up with more ideas about your symptoms.  I know how badly you want to get to the bottom of all this.  We want to be here for you!

Be well and have a lovely weekend!

'Zilla*

[Ramraji]

I'm glad you liked the link. I thought it was cool that they had detailed outline of the exam plus the short video clips. The good thing is these days my symptoms have eased up quite a bit. I don't have the persistant numbness and tingling in my hand and feet. I haven't had a dizziness episode lately and my appetite is better. I feel stronger and the fatique is also alot less. The only problem that I'm having on a daily basis is a tight feeling in my legs. If I walk or stand alot they really feel tired, tight and painful. Not super painful yet, but really pulling and straining the knees. I saw a physical therapist today to see if that will help with the tightness.

So all in all, I'm in much better shape than a month ago. I've got to try and hang in there for eight more years to retirement, then I can fall apart! Ha, ha.

You have a great weekend also, God bless, Rick