MS Treatment Centers of America

[HVAC]

Back when I got sober 30 years ago Alcoholism treatment centers were all the rage. Then it was Cancer treatment centers. The staff took the team approach.

How about a MS program. MS treatment Centers of America. They would get you on Steroids if you needed them. Start you on a DMD. Set up appointments with other professionals such as Urologists or have them on staff who understand MS. Work on PT and OT. Have common sense nutrition and teach about nutrition for Gasteroparesis and IBS common to MS. Mindfulness meditation to learn to deal with stress. Have sessions for the family to help them adjust to MS. Set people up with medical equipment.

I had ten days of in patient with alcoholism. Then I had support for years after. I was told I had MS and sent home. Since then I see a Neurologist every six months. I get sent to all kinds of Specialists who do not talk to my Neurologist and he does not talk to anyone on my team and none of them understand MS.

I have Doctors who do not understand MS. I feel like I have a second class illness. I either get loaded up with a drug for every symptom and those drugs cause more symptoms or I am told well you don't look like anything is wrong. Does a Doctor say well you only have a little Parkinsons?

They treat other illnesses aggressively. When will MS stop being a stepchild and be treated aggressively or at least with respect? I guess they have to know what it is.

I have even been asked by Doctors are you sure you have MS? If one more health professional asks me if I don't just have anxiety I may to clock them. Not really unless I just happen to have an unexpected spasm.

I drive by my large University Medical Centers UNC and Duke. They have all these different Hospitals for different things Cancer, Eye, Women's Health, etc. Neurology is tucked down in the basement of the main old hospitals. Duke has two MS Doctors, UNC has one.

Alex

[jujuminx]

Well said Alex. Fortunately for me, for now, I haven't had to deal with the issues you have had to deal with.  Perhaps in our lifetimes, this will be better managed for all.

Julie

[Jacksmom516]

I like Alex live in a major metropolitan area a half hour to Baltimore and an hour to DC and have to wait 6 months to get an appointment at a ms Center - and that is the one who decided to call me back!  It is asbsurd!  This is not that rare of a disease!  There should be more access to such facilities and I like what Alex says an MS boot camp -  I have spent more hours on the internet researching than should be necessary if there were access to a center that could answer my questions  I agree also while I love my neuro - she told me I had MS and gave me some booklets on DMD's and said choose one.  Needless to say I was upset and she did not even have tissues in her office.  hello you give people not so great news all the time - no tissues!  LOL  

So I researched and chose, who knows if correctly but it works for me and my schedule but we do not even know if I have RRMS but I am on a DMD with side effects and all the rest - she said well we will have to see how you progress.

Maybe my appointment in May with Johns Hopkins will be more informative but somehow I doubt it!

[opie74]

I se a local Neuro in remote south Mississippi.  I loe close to Oshners and Tulane.  None of them have a comprehensive MS center.  The closest MS clinic is in Cullman Alabama.  It is a 5 or 6 hour drive.  I was going up there every 6 months.  Last time I was there, the Dr forgot to sigh a script. Two phone calls and 4 months later, still no script.  So, een if they do exist, we don't all have equal access.  And they are so busy, that those of us how must commute long distances get lost in the cracks.  I am not going back to Cullman.  I guess that I should call and cancel my appointmen next month, but I htink that I am going to let the fall through my cracks!

I do think that HVAC is on to something.  we are treated like second class.  I was Dx with a sinus infection by my inturnest in august.  she gave me antibiotics.  Over the next 4 months I went to her clinic and had to see the NP 3 times for the same infection.  I could not get well enough to get my flu shot.  I thought I was having a relapse, and my neuro gave me 5 days solumedrol.  Turns out, that the infection was causing the problem and the steroids killed off enough of my immune system that the infection went wild.

If the inturnest office understood MS at all, I would have seen her, not the NP and I might would hae been treated more aggressivly.  Finally, my Neuro told me to go to my ENT.  He ran a culture, got me on the appropriate antibiotic and then hd to do a procedure to open a sinus cavity and basically pressure wash my sinuses to get the junk out.l  

My ENT's sister in law has MS.  He gets it.  If your other physicians have not had personal family experience with MS, they really don't know how to treat other problems.  They don't understand what really happens to people on immunosupressants and immuno-modulaters when they can't get over an infection.

Just my 2 cents and experience and frustrations as of late.  Thak God for my ENT!!!!

[Lulu54]

There is a comprehensive MS Center in Louisville, KY, that has everything Alex describes in her perfect world.  They have all these programs under one roof, support meetings for pwMS and for care givers, legal advisors, PT, OT, and on and on.  They are the real deal and it would be great if everyone had access to a center like this.

[HVAC]

I do not live in a small area. I live in Research Triangle Park. Durham is called the city of Medicine because of Duke University Medical Center. We also have the University of North Carolina Chapel Hill Hospital. Teddy Kennedy had his brain surgery at Duke. We have a large per capita amount of MS patients.

I guess I was just thinking wouldn't it be nice to have a program when you first are diagnosed where they concentrate on your MS needs for several weeks and educate you? I know it is a pipe dream. Sort of a MS boot camp. They access your condition and needs while giving you and your family skills to help deal with MS. In the future it might make a good business model. I guess insurance is what gets in the way. It would be cheaper for insurance since so much money is wasted when we have to go from specialist to specialist over pain, urinary problems, gastro, etc. half these general specialists are clueless about MS. Plus how many things turn into problems that end us up in Hospitals and ERs with Doctors who know little about MS.

People need to understand what MS is and how to cope with it. I didn't. I had all kinds of MS symptoms for years and was totally unaware. Handing someone a diagnosis and saying pick out a DMD is half hearted.

Alex

[JaneK1975]

I am headed to the MS Center at the University of Southern California in March. I think those of us that have access to MS Centers are lucky, and I hate that so many people - basically anyone who doesn't live in a major metropolis - doesn't have access to an MS Center.

Alex is right. There should be more access for everyone. I am guessing MS is rare enough that there just aren't enough people with MS in smaller communities to warrant a center. But I still think it *****. I wonder if some smaller private hospitals have programs for people with MS and other neurological diseases.

[Jacksmom516]

I live within 1/2 hr of Johns Hopkins and University of Maryland.  Both have "MS Centers"  I finally got an appointment with Hopkins for May 9th!  University of Maryland has yet to return a call - I started calling the day after my dx December 14th.  I agree with Alex why is it if this disease is as prevalent as it is supposed to be are there not more places to be seen and to be seen quicker rather than waiting 6 months for an appointment.  Why are there not more doctors available in a major metropolitan area such as I live in.  Very frustrating!!!!!!!!!1

[Sidesteps]

We have them here, in Seattle. Those large MS Centers with all that you speak about;  specialists IN the hospital that treat, rehabilitate, medicate and supplement your life with nutrition, physical therapy, medications and emotional support (therapy) specifically for MS.

If you look at the webpages of the Neuroscience Institutes at Swedish, Virgina Mason, Evergreen and UWMC, you will see the MS teams - RNs, specialists and MDs all working together to provide the best possible care who are very aware of the possibility of diagnosis or your diagnosis.

I realize I live in a hot zone so they had to do SOMEthing. We used to have the MS Hub but it appears (though I don't know for sure) the doctors that were about of the MS Hub are now leading the other facilities teams. Still, I have felt that it is still a challenging diagnosis and, like you, I'm waiting 6 months between visits for unknown reasons. That bothers me and is the reason why I'm getting a 2nd opinion at another one of those above.

[doublevision1]

What you're describing sounds like the kind of care often provided by MS centers at university teaching hospitals.  This is why I chose to be seen at University of Alberta MS Clinic instead of a general neurologist in private practice.  It is pretty comprehensive, there are I think 5 MS neuros on staff, as well as MS nurses on staff who do education, check injection sites, answer questions, are available by email/phone in between appts, do injections for patients who have trouble with doing these themselves.  They aren't set up to administer IVSM infusions but refer to the outpatients' clinic which is in the next building connected by an indoor pedwa., as is the MRI clinic where they refer patients.

This is similar to the Partners MS Center at Brigham and Women's Hospital in Mass, where I went once for a second opinion on treatment.  They were even more comprehensive with dedicated MRI machines and dedicated neuro-radiologists.

It would be nice if all patients could get this same level of comprehensive services regardless of where they live, their financial means, type of insurance coverage, etc.