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MS Nurses/Specialists: Where Do We Find Them?
I hear a lot of talk about the "MS nurse" or “MS Specialist”. I love nurses and specialists, and being recently diagnosed, I have a million questions that a good MS Nurse/Specialist could probably answer…
Is your MS Nurse/Specialist generally the nurse that you meet through the drug company that is providing your meds? I have yet to meet the nurse who will provide me with my injection training, but so far, that is the only nurse I am scheduled to come into contact with. Should I be planning to build a long-term relationship with her, or will the training be more of a one-time thing?
Is there some other place I should be looking for an MS Nurse/Specialist? (my neuro’s office? my local hospital? The National MS Society?) Any advice you can offer would be greatly appreciated.
Thanks,
J
Is your MS Nurse/Specialist generally the nurse that you meet through the drug company that is providing your meds? I have yet to meet the nurse who will provide me with my injection training, but so far, that is the only nurse I am scheduled to come into contact with. Should I be planning to build a long-term relationship with her, or will the training be more of a one-time thing?
Is there some other place I should be looking for an MS Nurse/Specialist? (my neuro’s office? my local hospital? The National MS Society?) Any advice you can offer would be greatly appreciated.
Thanks,
J
Don't forget to check with the various MS organizations when you're looking
for a support group.
Mary
for a support group.
Mary
Wow you guys. I really appreciate your help. I live in Long Beach, CA, which is about 20 minutes south of Los Angeles. My neuro has a pretty small office, and I'm not sure if he even has a nurse on the payroll. It's nice because I have direct contact with him and he has been extremely responsive (calling me the same day he receives test results and getting me in for appointments in less than five days), but I think it might be beneficial for me to try to access an MS support group or classes of some sort. I would probably learn about local resources that way.
It seems as though universities are the best place to go to find these sorts of things. I am lucky to have several universities within driving distance (UCLA, USC, UC Irvine). I know what I'll be researching for the next few weeks. I have already noticed via the web that there are several MS Centers in my area, so I just need to start calling them. Again, I am a lucky girl.
Thanks for the guidance, guys! I hope everyone has a wonderful day!
It seems as though universities are the best place to go to find these sorts of things. I am lucky to have several universities within driving distance (UCLA, USC, UC Irvine). I know what I'll be researching for the next few weeks. I have already noticed via the web that there are several MS Centers in my area, so I just need to start calling them. Again, I am a lucky girl.
Thanks for the guidance, guys! I hope everyone has a wonderful day!
Like DV I deal with nurses who work at the MS clinic at the university hospital where my neuro works. I phone in to report any concerns or changes to my symptoms, and I speak to whichever nurse takes my phone call.
The nurse who came to my house to teach me to inject Rebif was hired by the drug company for this one time training visit.
Mike
The nurse who came to my house to teach me to inject Rebif was hired by the drug company for this one time training visit.
Mike
JaneK,
Typically the MS Specialists have the MS nurses (my experience, and from what members have said here most often).
A nurse will teach you technique, but he or she would not be your go-to nurse for issues - unless you are having specific problems w/injecting, technique, etc. Your docs nurse would be for MS related probs.. Most all the newly dx'd or other lectures I've been to w/specialists have their NP with them.
Let us know how you make out on that website, it use to be easy to find the specialist by state, but since the site was rearranged, I found it a little harder to find that spot.
-shell
Typically the MS Specialists have the MS nurses (my experience, and from what members have said here most often).
A nurse will teach you technique, but he or she would not be your go-to nurse for issues - unless you are having specific problems w/injecting, technique, etc. Your docs nurse would be for MS related probs.. Most all the newly dx'd or other lectures I've been to w/specialists have their NP with them.
Let us know how you make out on that website, it use to be easy to find the specialist by state, but since the site was rearranged, I found it a little harder to find that spot.
-shell
A nurse contracted by the drug company did a one-time home visit to teach me to do injections.
The nurses I've dealt with on an ongoing basis work at the MS clinic at the university hospital where I see my neuro. It was one of the reasons I chose to be seen at a university clinic. I've been able to call and email when I've had questions or to update on my symptoms/relapses. They did a depression screening when I was first dx'ed as part of their protocol prior to starting an interferon (I started on Rebif but subsequently switched to Copaxone). At that first appt they did some education about MS but by then I had already read everything she covered, and then some. They act as go-between/gatekeeper for the neuro, and arrange for me to get IVSM at my local hospital when I'm having a relapse. They also take care of the annual paperwork for the provincial DMD program and ensure my coverage is renewed. During that annual appt they examine my injection sites to make sure they look ok. There are two nurses in this clinic and I see whichever one is there when I go to see my neuro. I just learned the one I saw most often has retired so I will be meeting the new one when I go back in a couple of months.
It's generally been helpful to have the nurses as a resource though at times has been frustrsating when they aren't able to respond to certain questions or requests. There are times when it would be better if I could speak to / email my neuro directly but that's not how they do things there. I understand with a full caseload, teaching and doing research that he is busy and I guess it's impractical for him to deal directly with patients outside of schedule appointments, hence the need for these nurses.
The nurses I've dealt with on an ongoing basis work at the MS clinic at the university hospital where I see my neuro. It was one of the reasons I chose to be seen at a university clinic. I've been able to call and email when I've had questions or to update on my symptoms/relapses. They did a depression screening when I was first dx'ed as part of their protocol prior to starting an interferon (I started on Rebif but subsequently switched to Copaxone). At that first appt they did some education about MS but by then I had already read everything she covered, and then some. They act as go-between/gatekeeper for the neuro, and arrange for me to get IVSM at my local hospital when I'm having a relapse. They also take care of the annual paperwork for the provincial DMD program and ensure my coverage is renewed. During that annual appt they examine my injection sites to make sure they look ok. There are two nurses in this clinic and I see whichever one is there when I go to see my neuro. I just learned the one I saw most often has retired so I will be meeting the new one when I go back in a couple of months.
It's generally been helpful to have the nurses as a resource though at times has been frustrsating when they aren't able to respond to certain questions or requests. There are times when it would be better if I could speak to / email my neuro directly but that's not how they do things there. I understand with a full caseload, teaching and doing research that he is busy and I guess it's impractical for him to deal directly with patients outside of schedule appointments, hence the need for these nurses.
I just saw mscare.org mentioned as a place to look up MS Centers in my geographical region. I'll try that. Any other ideas would be welcomed.
Sumanadevii, I'm so sorry you had a bad experience. That *****.
Sumanadevii, I'm so sorry you had a bad experience. That *****.
Well, I had an MS nurse specialist from Rebif that came into my home to teach me how to give myself a shot. She was to be my go to nurse for all questions.
Due to the way our first visit went, it was her last in my home. I just didn't take her calls. I found her not in the least understanding and she spoke to me as if I were six years old. I was 60 and didn't need her attitude.
If ya find a good one she/he will be worth their weight in gold. I personally would not hold my breath.
Due to the way our first visit went, it was her last in my home. I just didn't take her calls. I found her not in the least understanding and she spoke to me as if I were six years old. I was 60 and didn't need her attitude.
If ya find a good one she/he will be worth their weight in gold. I personally would not hold my breath.
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You want a whole team to take care of you - and I find the MS nurse is a great part of that team.
As for the drug company nurses, they are pretty limited to what they can do for you- there is the liability quesiton and they only deal with their own drug, normally. There are exceptions, but they are rare.