How Often Do You See Your MS Doctor?

I’m on Tysabri, so I see my neuro every 3 months whether I need it or not. She does a full neurological exam every time and we discuss whether any of my other meds have changed, etc. It usually only takes about 1/2 an hour so it’s not a huge hassle.

I completely agree with you! I don’t have time for visits or MRIs if they will not change my care. My neurologist says “call when you need me”. We end up talking 2-3 times a year, and seeing each other about every 12-18 months.

I go once a year, but it seems pointless, there have been no changes in the last 3 years and she doesn’t even do a full neuro exam. I walk across the room on my toes and then on my heels, she tests my hand strength, my reflexes and looks at my eyes. I’m in there for maybe 15 minutes with her. Heck, this last time she even forgot to send in a new prescription for me, I had to email them a week later asking for it.

I live in Israel, where it’s different, I know. MS patients see their neurologist every three mo ths for an exam and to get 3 mo ths of prescriptions. For me, it used to be Rebif and now it’s Gilenya.

When I moved back to Israel in 2006, I didn’t like the thought of going so often because in NY I saw my neuro about once a year. But now I like it. My neuro.ogist knows me. I travel a lot for work. Her first question s always to ask where I’ve been and how it was.

Liz

I’m almost 3.5 years out from dx and almost the same for starting on Avonex. Typically ever six months to this point for a check-in and on occasion if weird symptom. But I’ve had stable disease since six months after starting the Avonex so neuro said we can go to every other year for MRIs now (from once a year), unless something else happens. Apparently I have “mild” MS, which makes me feel better, if I have to have it at all! But he’s great about getting you in to see him if there are any issues AND he gives out his mobile number. Looking forward to the cold weather!

Twice a year. Whether I need it or not. I get the full neuro work up. We discuss meds. Sometimes change them. And she’s a fantastic Dr., very personable, we like each other, hug and have a great chat each time.

My wife used to see her MS neuro every six months until she tested JCV+ after being on Tysabri for four years. Now she sees him every three months with more frequent MRIs. Because she’s been doing so well with Tysabri, she & the doctor decided to stay with Tysabri. She’s having her 60th infusion tomorrow.

I see him every six months. Wether I’m on Tysabri or not.

My neurologist says “call when you need me”. Which ends up being two times a year seems like summer and christmas. Otherwise I don’t see him and I haven’t had any more MRI’s since my initial ones. I have been on my Copaxone on and off for about 6 years now taking breaks to have children.

It’s been over two years since I’ve seen my neuro. (The last time I had and MRI too.) I’m not on meds and he basically just said to see him when there’s trouble. My family practice doc takes care of the muscle pain issues.

I was diagnosed 3 1/2 years ago. I see my neurologist every six months routinely. And if and when I am relapsing, I go in for that. I like seeing him this often. Even if I am doing well, it is nice to talk to him about things I am going through. Sometimes he relieves my anxiety about certain issues, so it helps.

My neurologist would like to see me every three months as I did when I first was diagnosed with MS in 2005. When I was diagnosed he started me right away on Betaseron and a 4 day treatment of Solu-medrol 1000mg steroid. Each time when I saw him, I always got a full exam, and for most parts he would order another Solu-medrol 1000mg steroid treatment for 3 or 4 days. Usually he would order MRI’s at least every year or so to see what is going on.

I currently see him now every 6 months or so, or when I am having issues, the last time I saw him was in June 2012 because I was having issues, I was in so much pain that I could not stand it with more weakness on my right side, he ordered MRI’s and stated that there were some changes, but I have other issues other than MS and he recommends that I see a pain specialist. Does anyone else suffer from pain?

About every 6 months unless something comes up. Gets my scripts refilled while there along with a basic neuro exam an maybe some blood work. Haven’t had an MRI in about 5 years now – insurance doesn’t want to pay for them unless something is going on and it can be justified.

I see my neuo once a year just to keep in touch as that is how I got my “killer” tilt in space,wheelchair supplied for free($36,000.00)
Other than that there is nothing he can do for me,as he says, as I have SPMS and even the liberation therapy won’t help( I had it done twice)

Never since dx three years ago. Had been 10 years without relapse (dx was retrospective and somewhat late!) so was told to carry on and see her if I needed. Last year started having weakness and parasthesia in my legs, but since it was manageable I ignored it for ages.

When it did get bad enough (rose to my torso) to prompt me to get a neuro appt, my gp made it with the wrong consultant, which had a three month wait, then got cancelled and rearranged. It was getting to around six months and my symptoms had eased again so I cancelled it.

I am currently still experiencing manageable leg symptoms but I can’t see the point in going through that hassle to get an appointment when I don’t think I’m bad enough for medication. I’ve just started a new job and don’t want to start going off for appointments anyway.

Really, I have no idea if I’m meant to go in or if it’s ok not to as I’m fine managing things anyway. Would be nice to have an easier route to neurology but has to go through gp.

My neurologist expects to see me once a year but I have stopped going on a regular basis because he does nothing for me. I have progressed to spms so there is “no” treatment short of chemo. Don’t discount the PA that you were told to see. The PA in my neurologists office is the best person there. When I do need to go I make an appt. with her. She listens, asks the right questions and does the same evaluations my neuro does BUT with more warmth and encouragement!

I’m on Tysabri. Used to see Neuro every 3 months. now 6 months. I see the PA every month.

I m dealing with a lot of joint pain and weakness on the left side. Take lots of s scripts to help with pain, burning and etc

It’s been well over 2 years since I last saw a MS doctor…Got fed up with me going well over 100 miles thinking I would see her to only see her PA…So I quit!! And I also quit taking any MS shots or meds..
I have NEVER felt this good since being dx. 20 years ago…

I see my neurologist once a year, and his nurse practioner or PA every three months. I am on Copaxone and Lamictal for the seizure disorder I have in addition to MS. I have an MRI every 3-4 years, but no changes since the last one, so probably won’t have one unless there is a new symptom.

When I had problems with two of my medication I saw my Neuro every month, now it is twice a year. In the six years I have been diagnosed I only had two MRS. Having had Hepatitis I also see a Gastroenterologist every three month.

Hi,

I am on Tysabri and changed this past year to every 5 weeks Vs every 4 weeks. Since I get my infusion in his office, I see him every infusion. He does that for all his Tysabri patients. I always have questions about ms and he patiently answers them thoroughly. He is certainly a “keeper”. As per the TOUCH protocol with Tysabri he does a full exam every 6 months.
with the typical nerve tests.

Diagnosed in 1989 at age 29 and have been on Copaxone since 2000. I see my Neurologist once a year for a complete assessment (gait, visual, balance, strength etc.) The appointments are scheduled for 1 hour and the second half is usually an easy-going conversation about my time in the gym, my relationships, etc. I never feel rushed and I always leave feeling pretty good about myself regardless of my situation. Most people would never guess that I have MS, but my Neuro knows about the hidden issues.

Interesting question. My original Neuro asked me to switch to an MS Specialist that comes into his practice once a month. I did switch and saw her every three months. She did a full neuro exam twice in 2 1/2 years. I fired her and went back to my original diagnosing Neuro this past spring. She insisted I was severely depressed, even though I denied it. I finally went out and paid for a psych consult with a psychologist who agreed with me. I still work full time, have friends I see all the time and have a wonderful boyfriend. I have since come off the Wellbutrin she kept increasing and my awful tourette-like tremors and back to where they were before the meds she put me on. Did I mention she was certain I had Parkinson’s, too? I went back to my original Neuro, he said I did not. I asked him to take me back on. He agreed and I see him twice a year right now. He has said as long as everything keeps going well, we can go to once a year. He believes I am good on MRIs now until I have another problem. I am SPMS.

Hi Everyone, I was very interested in this question as I live in New Zealand and it seems our system is a lot different. I was diagnosed by MRI with MS in 1996. ( 95% certainty ) Since moving from one hospital area to another the bottom fell out!

Initially my GP went along with the diagnosis and I was seen by two registrars on the same day who ended up arguing in front of me. One diagnosed MS the other was certain I had a cancer in my spine. The cancer turned out to be a dud, ( by MRI ) and the other registrar sent a letter to my GP saying it was MS. For some reason my GP then decided that it was not MS. She acknowledges that ‘something’ is wrong in my CNS but because I am now in a ‘medical limbo’ and refuse to see anymore neurologists as there is only one at our hospital and he is a dud, then she has basically washed her hands of the whole thing. Pointless seeing another GP as my notes get passed on. Unless you fit in the box forget it!!
Kind regards ClangerX

When we moved to a different state, it took over 9 months to see a neuro, who saw me for 15 mins. He asked me why I was even there and then ordered an MRI. 3 months later he scheduled my return visit. I went in. He said, “Yes, you have MS,” and 5 minutes later sent me out the door.

I was very disillusioned because I was having new symptoms, difficulty swallowing, and falling every day. Unfortunately, Medicaid in the state determines who you can go to…and he was it. I finally got my primary care physician to refer me to a MS specialist. The primary won’t touch the MS stuff.

I went in but since the symptoms have stayed the same, he said I just have to deal with it. All of them say I am depressed, but I am not. I am happy, get out and do things and don’t fall under the depression steriotype…I am just very frustrated with the medical system.I’m still doubting if it is worth going as the symptoms haven’t changed and it is 2 hours away.

Dx’d 3 years ago. Relapsing Remitting. Taking Copaxone, Baclofen and Provigil.

I get to see my neurologist at least 2 times a year. He has a practice of over 400 MS patients, so it makes it difficult to see him unless you really need to. So I then have to see his PA. Right now, I have been having new symptoms and increasing symptoms so my neuro wants to see me. I do get an MRI yearly to see if there have been changes. My biggest changes have been cognitively and increase in pain. And that is why I need the MRI.

I see my neuro twice a year. He is great! He spends 30 minutes or more with me, doing a checkup and discussing any issues I may be experiencing. He doesn’t have a PA to pass me off to. My first neuro described my MS as “benign” and needing no treatment. I was very happy to find my current one, who put me on Copaxone immediately. He can spot changes that I don’t notice on a day-to-day basis.

Well, this has been very enlighting. My daughter, 26 years old, was with diagnosed with M.S.and low B-12 on July 7, 2012 and her life is a living hell.
She has great doctors, they are working with her, helping her cope, trying to get her stable. She is in a lot of pain and has terrible double vision. The vision issue has lasted over 2 months and we were hoping that it would come back, but as of yet, it hasn’t.
Since she fell into the college-parent insurance black hole, she doesn’t have any insurance and they are making it very difficult for her to get it. The wheels of progress are extremely difficult !!
She is a full-time college student and some days she’s in class for 8 hours and by the time I pick her up and bring her home, she’s exhausted, but she will stay up until 5a.m. doing the work.
She is extremely stressed out, feels like crap, has double vision and very bad leg cramps.
By reading your messages, you have given me hope that this will pass.and someday she will get her life back.
Thank you for that.

Diagnosed an year now with relapsing-remitting MS, I have also been taking Capaxone with good results. My neurologist meets with me twice a year to do all the neurological tests. My GP on the other hand is great, but lacks experience with MS patients, I would like him to be more in tune wiith the condition and symptoms..

BCBS raised my deductible to $3500.00 so I won’t be seeing my neurologist or getting a script for copaxone this year. I’m doing ok so far, just the regular symptoms of fatigue and muscle weakness but had that even when I was on copaxone. My doctor visits took about 15 minutes. He would sit with his head buried in his paper work asking questions. No exam was given so maybe I don’t need to see a doctor or take meds?? Time will tell…..

i didn’t see anyone address social security. to get on they ask, “if you are so sick why aren’t you going to the dr?” if you are already on, you will be periodicly reevaluated to stay on, and they will ask the ask the same question. it is the dr who has to fill out the papers, and if he hasn’t seen you in a long time what can he say. i understand it is a hassel, and expensive, but you need a record of how you are with some dr. even if you are doing good now. there will be a record of how you progress, you may be glad of that some day.

i see my wonderful neurologist about every 6 to 9 months and have an MRI every couple years. don’t know if i need the MRI so often but i trust her completely. she always discusses any procedure she wants done and asks me how long i feel i can go between visits, so guess it is my decision to se her so often. maybe i will feel more safe with longer time in between, someday.

I’ve been on Avonex since being diagnosed in 2008. I spend summers in Michigan and winters in Florida, so I end up seeing two different neuroligists. In Michigan I have to go twice during the six months I am here and have to have extensive blood work in which my neuro has me fast for 14 hours. In Florida I go once and have blood work that only requires an 8 hour fast. I really like both doctors, but wish I didn’t have to have the MRI’s every year since I have had no changes or new leisions. Both doctors spent as much time as I want at appointments and are thorough. My first experience with a neuro was in Florida. He was awful…but that’s a story for another day!

2-3 times a year for short check-up and to hear latest info on medications

I was diagnosed with RRMS in 2008. I had a choice of Rebif or Betaseron and opted for the Betaseron since I don’t have to refrigerate it. He only sees me twice a year. The check ups include watching me walk and doing some tests locally to see how I respond to “touch” on my feet and legs. I will admit that I’m surprised a new MRI hasn’t been suggested.

I see my neuro every 6 months. He does a complete neuro exam, renews Tysabri Rx, blood tests formJCV, CBC and monitor liver function. MRI’s 1x per year. He’s always available by phone if I have questions (relapse, symptoms, questions etc.) I like that he’ll discuss on the phone instead of making me come in every time, and I like annual MRI’s to check for disease progression that be readily evident through symptoms….I tend to ignore symptoms that don’t stop me in my tracks, or blame them on something else. Definitely have complete confidence in my neuro and the treatment plan we’ve decided on. Tysabri infusion #37 this month, he only has one other patient that’s been on it this long. He doesn’t tell me what to do, we discuss pros/cons and make the decision together. Although he did discourage me from taking a drug holiday just because I’m tired of dealing with MS treatment

My visits vary. I switched to Gilenya earlier this year so right now every 6 months. I don’t want to go just for the sake of going. I think I know better than anyone if symptoms get worse or new ones start.

I am on Avonex and provigil for the last 7 years. I see my neurologist every three months and usually have MRI’s every year. generally we do evoked potentials and EMG’s once a year also. This year we skipped the MRI. And she wants to see me in six months. I don’t mind it…she puts my mind at ease, tells me how great I’m doing.