Seeking MS Center Referral

[NettiP]

I presently live in southern California, but am in the process of searching for a new neurologist; preferably at an MS treatment center where I can receive comprehensive treatment that manages all aspects of therapy and where all involved healthcare providers—from neurologist to physical therapist to dietician, etc.—communicate between each other to ensure optimal, integrated care.

At the center/ hospital:

• Neurologist
o Openness to evidence-based complementary and alternative therapies with conventional Western medicine therapies
o Acknowledges the importance of the body/mind connection
o Communicates with other HCPs outside the hospital or center
• Neuro-Ophthalmologist
• Urologist
• MRI/bloodwork


Potential HCPs outside the Hospital
• PT/OT
• Speech therapist
• Orthotics clinic
• Psychiatrist for patient/caretaker
• Dietician etc.
• Infusion Center
• GP
• HBOT therapist

I have accepted that this may require a move—potentially across the country—but I must do whatever it takes to get the help I need.

Do you have any recommendations?

[Jules A]

I think you are going to have a hard time finding this combination. I know of some where the patient chart is kept on line with results accessible for other providers as well as the patient which is very handy.

I'm not sure there is a need for many of those specialties to communicate too closely for example my urologist passes along the results of my urodynamic study to my MS specialist but she is the one who prescribes treatment for my urinary issues. That isn't my neuro's specialty. He is just kept in the loop so my symptoms/progression can be tracked.

I'm pretty sure it would be hard to find a MS specialist who is willing to do much with someone's dietitian. It will be interesting to see if others have someone to suggest though. Good luck!

[Kittianne54]

That's a tall order. I have an MS Specialist/neurologist at a M S Center at a large hospital. I go to specialists he refers me to that are affiliated with the hospital so they can all see and contribute to my medical records. I see a female urologist, a neuro-opthamologist, a podiatrist, a sleep neurologist. Two other neurologists, one fills my baclofen pump, the other gives me the botox injections in my leg. He prescribes PT and OT as needed, MRIs, and any other specialists or procedures I need. They also keep my primary in the loop. They're all affiliated with the same hospital system, so they all have computer access to my records. I'm in Massachusetts.

[NettiP]

Seeking MS Center Referral

Thank you for your reply. I agree, what I'm asking for is a tall order but nevertheless it seems so urgently needed. The mandate of electronic data will resolve/address one of the issues. As we all know, MS is different for everyone and I believe that only combined efforts of all disciplines (healthcare providers/ wellness providers) will make the difference.

[MotuMikey]

I'd also be interested in a 'Top 5' or 'Top 10' list of MS centers in the US that take a 'whole patient' approach to care. My experience has been that, unless all of your health care providers are 'under one roof' communications breakdowns result in frustration and a bunch of time spent tracking down and distributing reports, test results, etc. Gotta be a better way!

[Mynamegoeshere1]

Dr

I see a Dr. at the Maxine Messinger Center in Houston, Texas with Baylor and all of the other Baylor Doctors are right across the street. They all have access to each others records and can read whatever the other has done. He has a physiatrist that comes in every other wednesday to help his patients. He is a wonderful Dr also and one of the best in MS care in my opinion. If you would like to know more, please look in my profile and private message me.

[22cyclist]

I presently live in southern California, but am in the process of searching for a new neurologist; preferably at an MS treatment center where I can receive comprehensive treatment that manages all aspects of therapy and where all involved healthcare providers—from neurologist to physical therapist to dietician, etc.—communicate between each other to ensure optimal, integrated care.

At the center/ hospital:

• Neurologist
o Openness to evidence-based complementary and alternative therapies with conventional Western medicine therapies
o Acknowledges the importance of the body/mind connection
o Communicates with other HCPs outside the hospital or center
• Neuro-Ophthalmologist
• Urologist
• MRI/bloodwork


Potential HCPs outside the Hospital
• PT/OT
• Speech therapist
• Orthotics clinic
• Psychiatrist for patient/caretaker
• Dietician etc.
• Infusion Center
• GP
• HBOT therapist

I have accepted that this may require a move—potentially across the country—but I must do whatever it takes to get the help I need.

Do you have any recommendations?

We have this at UNC hospitals in Chapel Hill NC, but it is all the way across the country. All of the medical records are online and the physicians and specialists communicate that way. It is an umbrella approach and works quite well. It is a research center/MS clinic and teaching hospital.

Duke University Hospital is also the same story and is about 15 miles down the road.

I am sure UCLA or some of the larger teaching centers offer the same care if you check into it.

Good luck.

Lisa

[MtnHigh]

Hope it's ok to list this.... If not I am sorry.. I have looked around to see if it was ok, but with all the kids bugging me too, it's hard to know if I missed something..

Hope this will help

Parnassus MS Center
900 Parnassus Avenue
San Francisco, CA 94143 415 476-4173

St. Mary’s Hospital, MS Clinic
2200 Hayes Street San Francisco, CA 94117
415 750-5762

Mount Zion Multiple Sclerosis Center, UCSF 1600 Divisadero Street San Francisco, CA 94115 415 885-7844

Department of Rehabilitation, MS Clinic Santa Clara Valley Medical Center 751 South Bascom Avenue San Jose, CA 95128 408 885-2000 408 885-2028 FAX

Transitions Rehabilitation Multiple Sclerosis Clinic 7101 Monterey Street, Suite A Gilroy, CA 95020 408 842-6868

Cedars Sinai Medical Center, MS Treatment Center 8631 W. 3rd Street 1001 E. Tower Los Angeles, CA 90048 310 855-6472 310 967-0130 FAX

Harbor – UCLA Medical Center, Multiple Sclerosis Clinic 1000 West Carson Street Torrance, CA 90505 310 222-3897 310 533-8905 FAX

[NettiP]

that is great information. I will research those sites. Thank you so much!

[MarkLavelle]

I presently live in southern California, but am in the process of searching for a new neurologist [...]

I have accepted that this may require a move—potentially across the country—but I must do whatever it takes to get the help I need.

Do you have any recommendations?

I only know about the San Francisco Bay area, but we have two major centers, at UCSF and Stanford. The area within a one-hour drive is pretty big.

I see UCSD also has an MS center: (http://health.ucsd.edu/specialties/n...is-center.aspx)...

[alanpgh]

Tall order, but available at major integrated MS Centers around the country.

In addition to some of the other suggestions, I would add:
Cleveland Clinic Mellen Center
I have gone to Mellen Center for a second opinion. From my experience, seems to be first rate well integrated operation.

And, in my personal experience, I am able to get most or all of what you have requested at UPMC MS Clinic in Pittsburgh, PA.
Dr. Rock Heyman and Margie O'Leary, MSCN, MSN, RN

Best Wishes!

Alan

[onlyairfare]

I have MS and I also had a brain tumor, for which I received care at Mayo Clinic in Rochester, Minnesota. I was living in Western Washington State at the time.

I am lucky in that my MS has not been too bad (I am officially "benign MS" until I am not), but the brain tumor people were wonderful and worked just as you suggested.

I would get a brain MRI as soon as I got to Mayo, read by the neuro-radiologist, then see the internist and the neuro-oncologist, and finally the neurosurgeon. All of them talked to each other real time so that each knew what the others were thinking and recommending. I got several "passes" ("We agree you do not have to have brain surgery right now") until 18 months later when "It's time to take out the tumor."

The surgical visit, I saw the internist and the anesthesiologist before hand too, as well as the other docs. I had seizure and bladder problems post-op, so the seizure neurologist and a urologist got added to the team. Oddly, or luckily, the MS specialist never needed to see me, as I was not having any MS problems.

They all kept my primary care doc informed and up to date too, even though he was in western Washington, which was very handy when it came time to take the staples out 10 days later. Most doctors would say "They put them in at Minnesota, go back to Minnesota to take them out." But since my FP had the summary and the instructions - no problem, staples were out (they were itchy and driving me nuts).

Now that I am not having any more brain tumor problems, I just see one neurologist, an MS specialist at "home" in North Carolina (I am currently working in Arizona but I fly back for check ups). I am lucky - he reviews my brain tumor situation as I do need regular checks for possible recurrence, and monitors my seizure medications, and of course manages my MS. In my stable situation I am happy not to need a team - when I was in Seattle, I had to see four separate at four different hospitals/offices. But if I did need different specialists, I'd go back to Mayo in a heartbeat, knowing they would work with my FP and neurologist, as well as any other team members needed.

From the looks of the other posts OP, you can probably find good integrated care right in California! Good luck.