Mayo Clinic?

[Mcoryea]

Husband is wanting me to try to see someone at the Mayo Clinic to see if they can help me. I like my neuro, but I've been to 2 now and they both seem to have the attitude of telling me I'm not that bad yet, so we don't need to look into this or that. I have bowel, bladder, mobility issues, depression, anxiety, spasms, falls, headaches.... and I'm not 40 yet. I can understand that a lot of my symptoms fall under the MS umbrella but when I say hey this is new or worse, I wish I would get more out of them than the standard, this is MS answer. I want to be SURE its not something else to deal with. I have yearly MRI's etc. Last years scans showed new lesions, a new one on my brain stem, which I was told was probably the cause of things getting worse. I broke my foot this Memorial day and been stuck in a cast/boot all summer. I fall a lot, get dizzy, lose balance. I'm just curious if anyone on here went to Mayo Clinic and felt like they got better care or more support/info than their neuro closer to home. I'd have to travel about 9 hours to go. Thanks everyone for any info.

[jackiesj]

I have been to mayo clinic 1982...before a hint of diagnosis of MS or its problems.Most docs are Practising and at that time it is a way to go thru doctors faster but unsure if better ones there.At least you have a husband beside you and that is a blessing,Check insurance first, do you live in the area?

[rjoneslaw]

I would advise against going. The dr I saw was all about himself he allowed my family to take over the entire appointment he never listened to me he never asked me questions. My family basically talked with him How can you diagnos someone if you don’t talk directly to them. Then to top it off he gave a diagnosis that would have had me on the wrong meds but gave a recommendation to stay on the meds I was on.

When I showed my neuro the report she said I wasted my time and money.

Also the dr was always putting my neuro down saying she was a horrible dr and he should be my dr. It wasn’t til several years later that I found out my dr was famous in the field and he was jealous another neurologist told me. I have yet to let my neuro know I know of her notoriety. She is completely down to earth.

[Iona60]

I was diagnosed at the Mayo clinic in FL. It was a team effort and they were very good, but matter of fact and clinical. Although I live close by, I sought out another neurologist that specializes in MS and has a more caring manner.

After being in this chat room for two years, most of us agree that the important thing is to find an MS center or a neurologist that specializes in MS. Your neuro should be seeking to halt or slow down your disease progression, if at all possible.

[anaishunter]

We all have different needs and different expectations from our doctors. You need to find a neuro (specialized in ms) that works for you and who you can trust.

The first neuro I saw who diagnosed me said: "I'm not an ms specialist and I'm sending you to an ms specialist team right away." She even called them to make sure I got an appointment as early as possible. This was helpful.

Then, what I really liked about the ms neuro I saw, is that, despite my very mild symptoms, he said right away: "we're going to get you on the most aggressive treatment you can get and as fast as possible so this disease does not get a chance to do any more damage to you." I liked that.

[erash]

Is your neuro at an MS center? It does sound like your concerns need to be better addressed than the responses you are receiving, whether that be at mayo or an MS center. Wishing you well🌈

[Mcoryea]

My neuro is not at an MS Center. She did send me to a MS specialist that is highly regarded in the field. He was the one that looked at me and basicly said why are you here, you are not that bad yet. I understand I might not be that bad in the scheme of things, but my goal is to not get bad and the symptoms I'm experiencing daily DO effect my life and are getting worse IMO. The specialist did suggest Ocrevus which I am interested in. I am currently on Aubagio and not experiencing any side effects, but if Ocrevus would even slightly be better for me, I would switch.

[Fancy1959]

Mcoryea, it's Fancy1959. I went to the Mayo Clinic in the fall of 2016 and had liver reduction surgery. The Mayo Clinic was one of the most amazing hospitals I have ever been. The surgeon I had was exceptional and was on top of my care and my needs without fail. I did not go see any neurologist for my Ms while I was there because my care was centered on my enlarging liver that I fight due to the rare genetic liver disease I have called Polycystic Liver. My liver functions at 100% but the silly thing looks like swiss cheese because this full of cysts. The cyst have enlarged it significantly and in 2017 I had to go have a portion of my left lobe of my liver removed because it was pressing on other organs.

I know that's not exactly what you were looking for but that is the only information I have to share. I hope it helps. Take care and let me know what you decide to do. Fancy.

[Mcoryea in reply to Fancy1959]

Thank you for the information Fancy1959!