Neurologists at Cleveland Clinic (OH) ?

[Alida]

Does anyone have a favorite neurologist at the Mellen Center of the Cleveland Clinic (OH location)?

I used to see Dr. Lael Stone who was wonderful but retired a couple years ago for medical reasons (and, very sadly, died earlier this year).

I'm 47 and I've had relapsing-remitting MS since 2000 - which is when I first visited this forum! I'm so glad it is still here, and I recognize a lot of your names.

My MS background: I have had few clear symptoms or relapses - some episodes of fatigue/fog mainly. I was on Betaseron and Copaxone early on but they both gave me more troubles than MS did (long story). I have a normal neuro exam and have not been on disease-modifying meds for 13-14 years, a decision Dr. Stone supported based on my history and MRIs. That's been a controversial topic with local non-MS specialists I have seen, which is why I went to the Cleveland Clinic in the first place.

One possible wrinkle - This month during a routine eye exam my doctor found some retinal thinning that looks like glaucoma, although I don't have elevated eye pressures or reduced peripheral vision (yet, at least). I saw a recent study that found that glaucoma risk is elevated in MS patients under 50. I imagine all the neurologists at the Mellen Center are familiar with vision problems, but if they have experience with glaucoma that might be a plus.

Thank you for any recommendations!

[Howie]

No good recommendations here, I just wanted to welcome you here. I'm sure someone will be along soon with the info you seek.

[agate]

Hi, Alida, and welcome back! I remember your user name but unfortunately can't recall any other details.

You've probably found your way to this but in case you haven't, you can check into the ratings of these Mellen Center MS doctors:

Only registered and activated users can see links., Click Here To Register...[searchCollections][0]=90&

I'm not familiar with any of the names except for Robert Fox, and I've seen a couple of video presentations by him that were quite good. I believe he's fairly well known in MS research?

The study you mention may be this one:

Only registered and activated users can see links., Click Here To Register...

Your eye doctor does regular checks of your intraocular pressure, probably. I'm pretty sure that most cases of glaucoma are treatable when caught early--not curable but controllable.

Sorry you're having this additional concern and I hope that you can find someone knowledgeable at the Cleveland Clinic.

[Sunshine]

Welcome back! I cannot help you with your question, but I enjoyed reading your story

[Alida]

Thanks Agate and Howie!

And Agate, I'll look into Dr. Fox. And following that link, all the Mellen Center neuros have pretty great ratings so hopefully I can't go wrong. I found Dr. Stone based on someone's glowing recommendation on this forum, so I thought I might luck out again. She was amazing.

I'm about a four hour drive from the Mellen Center but last time I saw a local neurologist in central PA it was a disaster. I asked to look at my MRIs with him and he said "ok, these are your eyes..." pointing at the two white circles on the front side of my head in the image. Thanks a lot. Then I made some comment about periventricular lesions just to show him, heh. So when I found out the Mellen Center takes my insurance I thought it would be well worth the trip to see an actual MS specialist for the first time in my life.

I've never had elevated intraocular pressure, which led my eye doctor to say this is an atypical case of glaucoma... which led me to wonder about whether it might be related to my MS. At my appointment the fancy new retina imaging they offer picked up the thinning. I'd opted for the up-sell because there's macular degeneration in my family (vs no glaucoma) and I worry about that. Nope, macula look great, but now I can worry about glaucoma. I'm trying not to be too worried, actually - I'm approaching the age at which there's not much difference in the number of glaucoma cases between MS and non-MS patients. More likely it's just my random luck. And maybe I only found out about it because technology to detect it is advancing, and I'd never know otherwise.

That is indeed the MS-glaucoma-cataract study I saw. It's kind of frustrating because they don't have much explanation of why there might be an association between MS, glaucoma and cataracts in patients <50. They talk about steroids as a possible cause (but in my case I've never even been on them).

BTW, I have pretty good academic journal access if anyone ever wants access to something that is paywalled.

[Lazarus]

I have a number of what I always refer to as visual oddities. The thing is that although they come and go they are problematic. Blurrinesss, optic nerve attacks and macular degeneration complicated by cataract and the newest wrinkle, epiretinal something. There is a pucker that is a real problem but not bad enough to try any risky surgery. It is amazing to view my own aurora borealis (northern lights) light show.

Anyway, good luck in our search and keep us posted!

[stillstANNding]

Hello Alida, welcome and thank you for offering your access if needed.

Have you tried seeing someone in Pittsburgh? Just wondering.

ANN

[Alida]

Hi ANN,

I haven't really considered Pittsburgh. It's 3 hours away so Cleveland's only another hour... plus I find Cleveland surprisingly enjoyable, and I like visiting Lake Erie (I'm landlocked out here). The Cleveland Clinic has impressed me so far so I think I'll stick with it. Unless you know a wonderful MS specialist in Pittsburgh??

I'm fortunate in that my MS hasn't been too problematic in the ~5 years I've lived here, or I'd work harder at finding a closer option. I will probably move to a bigger city within the next few years.

Thanks for the welcome!

[Virginia]

Nothing to add here, but wanted to welcome you back Alida. I remember your name.


Don't mean to hijack your thread here, but saw that Linda had posted that she had epiretinal (something ?) Linda, could it be epiretinal membrane close to the macular. I had that and felt so fortunate when it straightened out enough that I did not have the surgery. If this is what it is I can tell you from a retinal specialist that I saw that it is surgery you want to avoid if possible.