Who is your MS Specialist

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Who is your MS Specialist

Postby Mirry » Thu Sep 02, 2010 7:28 am

Good morning everyone

Being a newbie, I have been trying to catch up on as many posts as possible. I was first tentavely diagnosed in 1996 in the UK and recently diagnosed in the US as positively having MS. My first encounter here with a specialist was awful. If I had of been in the UK, I would of punched him on the nose for telling me to go lay down and take a pill and not taking any interest in my MRI's or anything I had to say (we dont get felonys for that in the UK) :lol: Anyway, needless to say it was my own fault for not researching about my specialist before I booked the appointment.

But, one common thread seems to be, lack of knowledge of the Dr and finding an MS specialist that really cares and will go above and beyond to help you.

My newest MS Specialist is without a doubt "awesome" as you can see in some of my previous posts.

My question is, could we start a list of MS Specialists, by our areas, that we have had great success with, that way, those that are just starting out or are having little success with their current one could maybe approach one that we have tried and tested and found to be a keeper. That would of certainly helped me in the beginning as I was thinking about booking a flight and traveling back home to see my Dr in the UK.

Any thoughts....

Mirry
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Postby Loumalone » Thu Sep 02, 2010 2:09 pm

Good idea Mirry!
I'm in Ireland and when i was woke up one morning with foggy vision my GP sent me straight to the nearest eye casualty 40 miles away. I know now what they suspected right from the start and they ordered MRI and LP but they weren't straight with me and i spent an awful night on IV steroids thinking they were looking for a brain tumor!
Anyway, after seeing the (part time) Neuro there and mentioning i'd been having a strange sensention in my legs but thinking it was down to an ongoing back (disc) problem (now i know it was Lhermitte's sign) he mentioned MS and i went away relieved, after finding that RRMS isn't as bad as i'd thought.
But even after a couple of follow ups 6 months apart he'd mentioned DMDs but hadn't pushed them and he almost was saying if it was him he wouldn't it was a bit early to consider this route.
Two yrs later then and i've been having worstening foot drop for a least 18 months(which i'd told him about) so i went to my GP and he referred me to St.Vincent's hospital in Dublin and to Prof. Michael Hutchinson.
They saw me within a month or so, repeated the MRI this time with contrast dye, were absolutely brilliant, didn't dum it down told me straight, introduced me to the MS specialist nurse and ask me to choose from 4 types of DMDs (all free thanks to our great health service!)
What's more when i'd decided on Rebif the rep/nurse came to my house, showed me the ropes, suplied me with my latest gadget RebiSmart and was brilliant! I started on Monday and she's phoned me twice to see how i'm getting on.

oops, sorry about the long post!

Lx
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Postby Mirry » Thu Sep 02, 2010 5:01 pm

Hi Lou

I love Ireland. Started tracing my ancestry about 26 yrs ago and found that my grandfathers side came from Bandon. I love the Irish accent and could sit and listen all day long.

When you get a specialist that really doesn't go above and beyond it can be emotionally and psychologically damaging, especially in the beginning because you are not expecting the diagnosis and really are blindsided and have no clue about the ins and outs of MS.

I am so thankful I have a great MS Specialist. We are in Las Vegas and I see Dr Leo Germin, Medical Director, Clinical Neurology Specialists. He has made some changes for his MS patients based on the information I took him from Jimmylegs. He told me he was going to do it but I didn't think he would get the ball rolling in just one week. He really seems to care and want the best for me whichever way I decide to go. I also like the fact that he doesn't sugar coat anything, he tells me like it is and I appreciate that, but he tells me in such as way as to not send me into a total panic overload, we just take each test result as it comes and will sit down together with everything and work out a plan of action.

I know you guys have rain over there, so please send me some, I miss the rain :lol:

take care

Mirry
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Postby itaska21 » Fri Sep 03, 2010 7:53 am

Somebody plase recommend a MS specialist in Houston Texas!!



Sincerely.. Marie :o
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Postby whyRwehere » Wed Sep 15, 2010 12:11 pm

I don't believe in specialists, because they assume they know everything there is to know on the subject. I prefer a doctor who is interested in doing the best for the cases they see, and who is willing to listen to your opinions.
What does an MS specialist really know about treating an illness, that has no understood cause, cure, or treatment anyhow? What drugs to take for which symptom? Big deal- for them.
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Postby surfbird » Wed Sep 15, 2010 2:25 pm

I saw Dr. Barbara Giesser at UCLA in Los Angeles and she was amazing. I think she only takes on consults and doesn't treat patients regularly though.

Currently I see Dr. Charles Smith in La Jolla, CA (San Diego Area). He isn't as warm and fuzzy as Dr. G, but he is responsive, thorough and sure knows his stuff.[/b]
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Postby Sourmash » Wed Sep 15, 2010 5:58 pm

I've heard great things about Dr. Giesser from someone who studied under her, although I've never had the pleasure of meeting her as I'm near NYC.

The first specialist I saw was Dr. Aaron Miller at Mt. Sinai in New York. He's very good, and is one of the most well-regarded/respected MS specialists in NYC. He definitely knows what he's talking about and made me feel very confident about the treatment I would receive.

About a week after seeing Dr. Miller I had an appointment with Dr. Saud Sadiq of the International Multiple Sclerosis Management Practice (they also have a research arm called the Multiple Sclerosis Research Center of New York).

Dr. Sadiq is one of the nicest people I've ever met. My first appointment (as well as my second, my third is in January, though I've been able to speak directly with him on the phone whenever I've needed to) lasted a little under three hours. The first two minutes were spent with a nurse, who was getting all the basic stuff done, blood pressure, weight, etc, but after the blood pressure Dr. Sadiq walked in and said he'd take over and I spent the rest of the time with him.

He really cares about his patients as people, not just as their respective illness/symptoms. We even spent time talking about my personal life, and he gave me some good advice on it. But the main thing is how dedicated he is to his patients, as well as finding the cause and cure of MS (he still handles research as well as sees patients).

The wife of a friend of my father's has MS as well. She was in the hospital for a particularly bad exacerbation and that's when they found Dr. Sadiq. He told her that he would be with her every day until she got out of the hospital, and he was, didn't miss a single day and didn't just pop his head in, but spent time with her. I know that for her, he's made a huge difference in the disease (she has SPMS). For me, he helped me out of the really bad place I was after my diagnosis.

I know, I'm going on and on about Dr. Sadiq, and I do think he's the best doctor I've ever met, but I don't want anyone to think that Dr. Miller is anything less than an excellent doctor and one of the best MS specialists in the area. You can't go wrong with either of them.

One last thing--I think the reason you see a specialist is that the specialist has spent so much time with MS, knows it so much better than a non-specalized neurologist, may be able to see things coming, and definitely keeps up with the latest research and trials going on. Personally, I'd rather see a doctor who dedicated his/her career to MS than someone who might see a case of it a couple times a week, if that. That said, if your doctor isn't willing to listen to your opinions, then it might be time to get a new doctor.
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Postby Mirry » Wed Sep 15, 2010 7:25 pm

Hi sourmash

I agree about seeing an MS specialist rather than a regular Dr. My Dr is great but doesn't have the knowledge my specialist does and he is the one who referred me to a specialist. Now, the first one I saw here Dr Bouleware, was a total waste of time, didnt care, told me to go home and take a pill. Really????

Mr Dr referred me to Dr Germin, I had reservations after the first specialist, but he listens, does what he says he is going to do and cannot do enough for me. I have a number for his assistant and can call anytime I need and if I need him, he is right there, to me that is the sign of a great specialist.

I agree, if your Dr doesn't care, find another one.

Mirry
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Postby JadeVictoria » Tue Sep 21, 2010 7:45 pm

My first neuro was Dr. John Foley in Utah. He's a nice guy, but his practice is way to busy. He is in and out as fast as possible. He does have an aggressive attitude toward treatment.

I also saw Dr. Miravelle at the Rocky Mountain MS clinic in Denver. I saw him for a 2nd opinion, but I wouldn't choose him to be my regular doctor.

Thursday I see Dr. Charles Smith in LaJolla since we just moved to San Diego. I'm crossing my fingers that I'll like him. Jade
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Postby koopico » Wed Sep 22, 2010 4:41 pm

Hi,

I'm looking for a new neurologist in the Los Angeles area!
I've been with the same doc--not a specialist, but definitely knowledgeable about MS. Probably not quite the right fit for me, personality-wise though--even though it's been 9 years! And since this is a relationship that's "forever," I'd like to have it be as right as possible.

Of course skill level is extremely important; but a good bedside manner's very important to me too. He or she doesn't have to be an overzealous "cheerleader," but I'd like someone who makes me feel like we're on the same team.

If anyone has any great referrals, I'd really appreciate it!

Thanks!
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Postby koopico » Thu Sep 23, 2010 12:38 pm

BTW, great idea, Mirry--thanks for posting this!
:)
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Postby Mirry » Thu Sep 23, 2010 2:52 pm

Koopico, thxs, I wish I had known about this site before I picked my first specialist, he was awful, my new one is fantastic and if I can help someone else have a great specialist, job done as they say :D
Mirry
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Postby mattalleng » Thu Sep 23, 2010 8:34 pm

I'm in SoCal, Riverside area, I am about to start seeing a specialist at Loma Linda, trying to get my referral information straightened out, I have Kaiser and luckily he accepts it, so once I see him I will let you know how he is, what area are you in?
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Postby msmything » Fri Sep 24, 2010 5:19 am

i'm in th burbs of Chicago, I've always been a big believer in Univeristy Hosps. So, I spent a few years going downtown...

I started seeing Dr. Wynn in Northbrook, and loved him. Then, his real self came out. If my husband was not in the room with me, he spoke to me cruelly. VERY cruel.
When I last saw him, he was going over the results of my neurospsych eval, and I brought up my concern that it looks as if I've lost alot of IQ points.
His answer was 'you were never that bright', as he closed my folder he said get long term care insurance, go on disability. Nice touch eh.

Now I see Dr. Katsamakis. He used to be at Rush, now is with a large group and works out of 3 offices in the suburbs. I'm quite happy and comfortable with him.

It's true though, there isn't alot of treatment, it's good for me to have a touchstone that knows alot of what I'm going thru.
Be kinder than necessary, for everyone you meet is fighting some kind of battle..
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Postby koopico » Fri Sep 24, 2010 9:48 am

mattalleng wrote:I'm in SoCal, Riverside area, I am about to start seeing a specialist at Loma Linda, trying to get my referral information straightened out, I have Kaiser and luckily he accepts it, so once I see him I will let you know how he is, what area are you in?



Hi! I'm in the West L.A. area--Riverside's about an hour away. But I would be willing to make the drive for the right doc. GL with your appointment, and let me know what ya think!
:D
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