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Have you been to a MS clinic?

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    Have you been to a MS clinic?

    I know that the VA has specialty clinics for MS. Has anyone been to one? What are the benefits? Can I just call one and request an appointment?

    My primary care provider is totally clueless about MS and MS patients in the VA system. I had to switch a seizure medication because it is not on the formulary so she asked that I get my neurologist's permission to change it to Keppra. After I did that she asked me to call my neurologist back and find out the appropriate dosage. I also got that information to her. I have had to ration my medicine while she gets it together and I still may run out.

    I had tried to call her last week because I am sure I am having an exacerbation. I waited until I had the symptoms for a full week to make sure. Her nurse called back and told me that if I am having an increase in symptoms that I should call my private neurologist.

    They did put in a consult for a VA neurologist, but I don't have an appointment, yet.

    I don't want to jump the gun and call the patient advocate but I need some help.

    My foot drop has become severe and the pain (which is usually tolerable) is intense. My hand is doing the jerk and my vision is a mess (never had vision issues before).

    #2
    Nashville VA Neurology

    Katvar, I haven't been to VA MS clinic. I go to Nashville VA Neurology and Opthalmology-the Neurology clinic prescribes my MS meds. I go to Murfreesboro VA for primary care. At Neurology, I see the nurse practioner or sometimes docs on loan from Vanderbilt. I used to go to Vanderbilt MS Clinic. I know I am not the only MS patient at Nashville VA. My primary care doc, refers any issues with MS meds to neurology clinic. The nurse practitioner at the VA Neuro clinic told me to call her if I have exacerbation and they will get me on steroids asap.
    I don't know. I want to relocate when my daughter gets out of school (6 more years) and I am thinking Portland, OR. I am orginally from CA and have family in CA, UT and WA. That would get me closer to family and at a VA with MS center. But, just thoughts right now.

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      #3
      Hmmm, I live in the Marion, IN hospital area. My husband (he's 100% P&T) just switched out since we are in an in between area. We are headed to Murfreesboro dental clinic in the a.m. We have been in the Nashville system before and he decided that they offer a higher level of care. At this point, I agree.

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        #4
        I go to the Center of Excellence in Salisbury NC VA, it is GREAT they have an infusion center with 2 tremendous nurses, if you have any problems you can call them and they will speak to the MS Nuero and get right back to you.

        I had problems getting my Ampyra when I first changed over to thier care and the nurse was on the pharmacy everyday until I got it and called and told me it was in so I could go pick it up (only 20 mile drive) she has also assisted me getting with PVA to get my SC claim processed and had the DR refer me to the PT to get me set up with a walkaide (have had a temp unit since feb waiting for paperwork to go thru to get my own now)

        She gets the paperwork for bloodwork and MRI's from the dr to get them set up. They know everybody by name and give hugs when you get there and leave. I could not ask for better care and I had a very good nuero previously.
        Plan for the future, but not too hard; it’s not your decision anyway

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          #5
          I see the Neurologist, Ophthalmologist and Primary Care at my local VA. I also get my Tysabri infusions there. They do not have an MS Clinic. I go to the VA Hospital in Albany, NY.

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            #6
            I am ready to give up on this clinic. They finally referred me to neurologist. I have an appointment for the end of September. I am not a sit around and wait kind of person, so this whole three ring circus that this local VA is putting me through is really pushing my buttons. The communication issues and lack of knowledge regarding MS seem to be isolated to this clinic.
            Advice at this point would be greatly appreciated. My husband feels that I need to involve the patient advocate. I would like to just go to a bigger clinic within the same VISN. The local clinic has only been open 3 years and I have not heard anyone say anything positive.
            What are my options? Can i just call the MS clinic for my area and make an appt?

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              #7
              contact patient advocate

              I think your husband is right. I have been to see my patient advocate a few times. Usually, with a question of how to get information. He has always been helpful and directs to the right office(sometimes person) who can help me.
              The problem I had with the civilian doc, who gave me my dx, is that he was a neurologist, but not very knowledgable about MS and the need for quick treatment. In fact, he didn't even think of MS, he thought I had tarsal tunnel syndrome. It was an ER doc, that put everything together and suggested possible MS, after a fall at work.
              The docs and NP at the VA are way more knowledgeable about MS, so I am happy with them.
              So, go see the patient advocate, tell him the situation and what you need and then ask him what you need to do to get the medical attention you need. Good Luck

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                #8
                I don't go to a MS clinic per se. MY VAMC about 5-40 miles away, holds a MS clinic day, Thurs, once a week. I always see an intern etc, but I also see Dr Segal who is a MS specialist that also heads the MS clinic at U of M.

                I guess that is close to MS speciality clinic I can get. So far Dr Segal has been very good. Trying to get/schedule an appt for MS follow-up/issues with the neuo clinic is a challenge.

                Gomer

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                  #9
                  I go to St Louis MS clinic at John Cochern va hospital. Im in Southern Illinois, Get ahold of a Patient advocate. They will get you in.
                  LCPL USMC
                  DIOG 12-26-2006
                  BETA 3-15-2007

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                    #10
                    Thank you for all of the supportive advice. I did switch to a clinic a bit further from my home, but I feel that it will be worth it. They gave me an appointment for next week and I will be more assertive in expressing my desire to go to an MS clinic. I would go to St. Louis.

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                      #11
                      Originally posted by katvar View Post
                      Thank you for all of the supportive advice. I did switch to a clinic a bit further from my home, but I feel that it will be worth it. They gave me an appointment for next week and I will be more assertive in expressing my desire to go to an MS clinic. I would go to St. Louis.
                      So are you going to go to St. Louis?
                      LCPL USMC
                      DIOG 12-26-2006
                      BETA 3-15-2007

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                        #12
                        I am under the impression that my new primary care doctor will have to give me a referral to the MS clinic in St Louis. Referrals are my priority for this appointment, next week. I am in desperate need of an eye exam, some items from occupational therapy and a referral to the MS clinic.

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                          #13
                          Originally posted by katvar View Post
                          I am under the impression that my new primary care doctor will have to give me a referral to the MS clinic in St Louis. Referrals are my priority for this appointment, next week. I am in desperate need of an eye exam, some items from occupational therapy and a referral to the MS clinic.
                          Keep up updated
                          LCPL USMC
                          DIOG 12-26-2006
                          BETA 3-15-2007

                          Comment


                            #14
                            Some progress

                            Went to see my new PCP - what a surprise she knew very little about MS. She gave me a referral for an eye exam and they scheduled it for late September.

                            I asked for a referral to PT/OT so I could get a cooling vest. Well, the doctor never heard of such a thing so she had the nurse call PT and ask about it. They educated her about MS a bit So I will be seeing them August 16th to get that taken care of.

                            Other than that, she informed me that I won't be seeing her much because she can't do anything for me. The neurologist will have to take care of any other MS issues. I have an appt. with the VA neurologist in mid September - so I will wait. I am under the impression that the neuro has to refer me to the "MS clinic".

                            Overall I am fine with the progress I made - I wasn't expecting a miracle.

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