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    Do veterans get referred to MS Specialists?

    Can veterans or people in the active military, diagnosed with MS, ask to be referred to an MS Specialist for treatment? Are there many MS Specialists available?

    Also, are all of the MS Disease Modifying Drugs easily available?

    What about Symptomatic Treatments (like AMPYRA, Provigil, etc.)? Are these easily available to Veterans and active military personnel diagnosed with MS?

    Thanks!
    Alan

    #2
    At the VAMC I use they ahve a MS specialist that holds MS clinic once a week. I get Copaxone thru the VA, they ahve other DMDs as well. You might look up VA MS centers of excellence or such to see if there is one near you.

    IN my case its about the only half reasonable care I currently get via the VA, however I get NO, NADAN nuthing from the VA as far as mobility aids, not even a simple cane. ALL my mobility aids I had to buy 100% out of pocket, except medicare covered my AFOs & power chair.

    I had to sell my favorite Mamiya medium format SLR camera to a collector to raise funds to get a scooter so I could get out and about to big stores, mall etc. My MS doc etc know I have mobility problems and been hospitalized and had multiple surgeries due to falls.

    Depending on your state you might get the same non-existant help, then again if in another state, great help with mobility issues. I am in Michigan and asked WHY we get to nothing in the way of help (beyond a MS doc, MRIs and a DMD), he said other states simply gave bennies and aids away.

    If I could afford to change residence states I would be very tempted. I hear tenn is also a poor state for vets.

    Gomer Sir Falls-a-lot

    Comment


      #3
      Hi Alan,

      I was medically retired for MS in August of last year. I saw a civilian MS specialist while on active duty. I was never denied any treatment (except nuvigil), but provigil, Ritalin, pain meds, MS meds, never denied. I had a power port placed, a Baclofen pump trial, Tysabri infusions, and even a second opinion by the Cleveland Clinic in Las Vegas. I used ACTH at 23K monthly and paid nothing.

      As a veteran, I see civilian doctors. No meds have been denied. I am currently receiving IVIG monthly which is very expensive (19k) monthly, all of it has been paid for. I have a $12 copayment for docs and copayments for meds ranging from $0 to $25 (cymbalta).

      I hope that helps. Since MS is considered a service connected disability, I suppose they don't refuse much related to MS care.
      Melissa (dx. 3/22/2011)

      Comment


        #4
        I am 100 S/C I get all care and drugs thru the VA N/C, there is never any problem with being turned down, if the dr prescribes it you get it period, no approvals needed. I am listed as class !, if my VA cant get me to a specialist within 90 days routine appointment then they must give me a refferal to civilian dr with no copays on any appointments. My VA is a MS center of excellence. I am on Tysabri and Ampyra.
        Plan for the future, but not too hard; it’s not your decision anyway

        Comment


          #5
          I am 0% service connected. My VA primary care is a M/S specialist. I am currently taking Gelinya, Ampyra, and Provigil. About 2 years ago I started using a cane that was provided by the VA and a few weeks ago the VA had wheel chair ramps installed at my house and provided me with a manual wheel chair and ordered a scooter and lift for my truck.
          I have never been denied any meds or mobility aids. I was also reclassified as a priority group 4 catastrophically disabled, which means no copays. The PVA (Paralyzed Vetrans of America) helped me get to this point.

          I know that the VA has MS Centers of Exellence located in every state.

          Comment


            #6
            Alan;
            You've posed a somewhat tricky question. What standards were you basing it on?

            You might want to check the sticky threads of this section. A while ago I tried to compile an accurate view of the VA experience in terms of MS.

            For the most part (and in my view) most VA's run a well-staffed Neuro unit keeping in mind that there is still some work to be done when looking at a state-to-state comparision. Most of the large main VA hospitals are rated as MS Centers Of Excellance.

            That being said, its been my experience that VA Dr./patient relationships are a "one-to-one" type of affair.
            You could have a great Dr. in a not-so-great location and consider it a success. You could also have a not-so-great Dr. in a Taj Mahal hospital and a negative experience.

            A lot of this comes down to your expectations as a patient and what kind of Dr. you respond to.


            As far as DMD's, the VA system is federally mandated. If you're talking about DMD's with a proven track record there should be no problem. If you're talking about meds that are new or unproven, that might be a problem although VA hospitals may elect to join a study and you'd still have convince your Dr. to write the Rx.

            The question about symtomatic meds is confusing. There shouldn't be a problem but I'm not sure what you're getting at. Recall that the VA is federally mandated. As long as the Feds say its OK, there shouldn't be a problem.
            Of course, your Dr. would also have to agree to Rx a given med so your question is a little confusing.

            Comment


              #7
              I'll pile on with what looks to be an increasingly "it depends" response to your question. In my case, active duty my care has varied depending on the tricare region I was assigned. Upon ppms Dx by a mil neuro in Alaska I was readily referred to a civ ms center of excellence I the lower 48. Referral was likely result of rarer ppms dx and non-availability od specialists in AK...so maybe an atypical experience. I was able to gain approval for non-FDA approved treatment with rituxan.

              Upon PCS to Texas (tricare south region) it took me several months to fight for sub-specialty referral to ms specialist (even after civ in-network neuro recommended). I was eventually referred out of network. Next battle was for RE-approval of non-FDA approved rituxan. Another month for that including an appeal to tricare regional authority. I still don't know what the process was despite asking for the process to be laid out multiple times. I tried to be aggressive w/o being unprofessional or unreasonable with the medical administrators, patient advocate etc.

              Some of my recent challenges might be because I pcs'd and changed regions, but I'm prepared to argue my case again for my next dose in 6 months since they couldn't tell me whether approval was one-time or longer.

              All that to say, in limited experience, it depends. I think if your dx and Sx support specialty treatment, either initially or for continuity of care, you need to research what's available in your coverage area and get your PCM and local neuro on your side.

              Comment


                #8
                I got my DX by the VA sending me to an outside MS Neuro. Of course the Neuro's at my VA freely admitted they knew nothing about MS so that is why they sent me to an outside doctor. I don't get any of the DMDs as I have a PPMS DX.

                The last time I saw my outside doctor he informed me that the VA told him they won't be sending me to him anymore. This is because they hired a MS NP at the hospital. Have seen the MS NP only once and NOT at all happy about the level fo of care from her though.
                Dennis

                The soul of a song will lift your spirits.

                Comment


                  #9
                  MS and the VA

                  Alan,

                  I am a veteran being treated for PPMS at the Houston, TX VAMC. Yes the VA system is lacking in MS treatments; in my case, failing to dx me after 4 years of trying to figure out the problem with my left leg. EMGs after EMG. A non VA neurologist doctor went a little further with her testing.

                  She had suspicions of MS and after many test referred me to a MS specialist. After reviewing my exams, he confirms me as having PPMS, which gives me some information to take back to the VA.

                  The VA neurologist doctor offers different DMDs; such as, Ampry and others. Then consults for OT and PT. The center of excellence since a package to me with pamphlets and videos describing what the VA has to offer veterans with MS. I recommend requesting a package from Dr. Tarver at MSCoE. While there, check out the website.

                  Now, here's what the VA did for me. OT provided grab bars in my shower and toilet areas, a rollator for walking, a wheelchair with ramps for easy entry and exit at my home, and lastly driver training for hand controls to be installed in my truck when I become service connected for MS. PVA is helping with that.

                  PT is helping to strengthen my legs and techniques for stretching my leg muscle.

                  The VA is coming around with it's treatment of veterans with MS. Here in Houston, they are working with the National Multiple Sclerosis Society so, we all should be patient...I guess. "All good things come to those who wait, all in good time."

                  I hope this information helps you to visit your VAMC for treatment and mobility issues.

                  Scope
                  DX with PPMS since 2010

                  Comment


                    #10
                    my son with MS

                    my son was hit by an IED in Iraq and has TBI and PTSD and now MS. when they was first told to him by a dr. he never got another opinion. we are going to do that . but the tremors,and not walking is hard on him. but the army dr. at Fort Gordon where he was sent tried to say it was not service connected. we have since got that set straight. and the VA has been great about getting his meds. and shots. but after 7 years never gets easier. and he was married and she "dumped" him in an old folks home and we got him out and with us. I encourage all to be tested and especially TBI and any who were at the burn pits in Iraq. long road and its only started for our family since we got him with us only in Jan. of this year. and some states are great with the VA .Hawaii is the worst. and I mean the worst. having lived there over 30yrs. the worst treatment,for anything for our vets. dont get sick there you will never recover. and I am very bitter about the lack of treatment for my son. but not just MS .the whole lack of concern is very clear

                    Comment


                      #11
                      VA Care

                      I have been using the VA for all my health care since 1999. I have two service connected disabilities. My rating is 70%. I was diagnosed with RRMS in November.

                      I also worked at the a VA outpatient clinic for several months, few years ago.

                      If you do not think you are getting what you should be getting from the VA. Go see the patient advocate. Every VAMC has one.

                      It has been my experience that not all the providers understand the system and how rating, service connection and entitlement work. I don't blame them. That is an administrative puzzle and I want them to work on the medical puzzle.

                      I use VAMC Madison WI which works with University of Wisconsin Hospital. My care and availability of care have been better than what I have seen my family receive at the local hospital.

                      We have an MS team consisting of a nurse, MS nurse practitioner and an MS neurologist.
                      Cindy
                      dx RRMS Nov 2012
                      Copaxone started March 2013

                      Comment


                        #12
                        Good info here. I have my C&P exam tomorrow at Madison, WI VA. I am 28 and show no major signs of disability (yet), so I am not sure what to expect. My main symptoms have been diplopia on two separate occasions about 13 months apart.

                        Comment


                          #13
                          Originally posted by Noah091 View Post
                          Good info here. I have my C&P exam tomorrow at Madison, WI VA. I am 28 and show no major signs of disability (yet), so I am not sure what to expect. My main symptoms have been diplopia on two separate occasions about 13 months apart.
                          If you've already been diagnosed, mention it (and who your Dr. is/was).

                          The C&P exam (in my experience) was a "broad outline" kind of exam where the Dr. was looking more for overall health issues so they could figure out where to send me next. In many ways with MS, its better not to know what to expect at your C&P.

                          If the Dr. is a Neuro, they'll check a lot of things. Some of them can be subjective on your part (ie, stuff they'll ask you about). Its actually better to have this part come at you like a surprise. Just be yourself and let them do their thing.

                          Comment

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