Any other Nurses out there with MS
 

I am a CNM with MS, and have been diagnosed for 10 years or so. Last night I was on call and was delivering a patient of mine who just happened to mention that her sister was an RN and also has MS. I've met so many nurses with MS it seems odd to me.

I was just wondering if there are any other nurses on here who have been diagnosed or are in the middle of being diagnosed with MS.

Thanks you lot.

Chris, Yep, there are a lot of us nurses on the boards. I was an active nurse until last year. Finally after 39 yrs of nursing was forced to retire on disability. I've done it all from med surg, critical care, and finally case management for an insurance company. The stresses of MS and working were just finally just too much.

Somehow when I was young I never imagined that my MS would get so bad that I just couldn't work anymore.

Luckily I had all of the right disability insurances and so life without work hasn't been too bad. My advice to everyone with MS is get all of the disability insurance you can afford as quickly as you can. It's a rare person with MS that makes it to 65 without needing to retire due to their MS symptoms.

Hope you can continue to enjoy many more years of active working. Betty

Lovely to meet you Betty,
Unfortuntely for me, I was diagnosed before I started working in this country.
I work in a large OB practice and was turned down for disability because of the diagnosis. I have been contributing to our 401K fund, in hopes that it will help in the future should the need to retire earlier than expected arise.

We're hoping to start a family in another year or so, and I'd like to go part time if they'll allow it. Things here are quite different than they are in the UK where I am from initially. The system here seems to cater to the healthy and the wealthy from what I can see. But, I still am able to perform my duties without many problems, and the day after the nights on call, we are all given the next day off to recover.

I'm terribly sorry that you had to retire early. I must say, I love what I do, and I'd hate to give it up. But I do realize that it is a possibility in my future.

Thank you for your advice.

Chris

Here's another one. I was in nursing for almost 30 years. I worked 2 years after dx and my neuro said I probably had it about 5 years before dx. I was lucky to have worked at a large hospital that had disability insurance which I was able to draw for 2 years before I was put on SSD. I am much healthier since quiting work.

I am a nursing student- and in limboland. Currently, I work in veterinary medicine. I love what I do, just don't get paid enough for the patients I work with! My shifts are 12 hour overnight emergency shifts so they are pretty active and pretty physical. Just hoping I can keep this pace up until I get out of school and have more options.

My wife, who has had MS for over 35 years, is an RN. She had her first attack just after she finished nursing school in 1971.

For the next 20 years, she lead a very active, sports-filled life and took nothing for her MS...there wasn't anything to take! Then in 1991, the symptoms gradually started to appear and she became SPMS in 1996. That's when she had to quit her job as a Manager in Critical Care....that was the hardest thing she ever had to do because nursing was her life.

Harry

I have noticed that there does seem to be an awful lot of nurses, and teachers, that have MS. Tranditionally, these two tend to be 'female' career choices, so that may be the reason alone (largest % of MS'er are female).

A thought that has come to mind is that perhaps these two groups are exposed to more viruses/bacteria then others generally are. :confused:

If it were nurses/doctors with an apparent higher incidence, I'd be tempted to consider testing procedures, like radiology (xrays) etc. as a possible trigger.

Cherie

I put out a query like yours a couple of years ago on the BT forum, MS World, Nursing Spectrum, and a couple of other forums and in two weeks had 43 RN reply. We went to a space that IOMSN provided for message space to communicate with each other then they became concerned when we started discussing individual therapies.

MSWorld then provided us with a password protected site where not only RN's but any health care professional could go to communicate out of the public eye. That is closing on 10/31/06 because folks have fallen away from that forum. There is a Nursing Forum at Brain Talk and some of the nurses have MS.

I personally keep in touch regularly with 4 physicians, 27 RNs 3 LPNs 2 PTs and several social workers with MS and am wondering if it is worth looking for forum space where we could communicate out of the public eye. is this something you are interested in? If so, PM your email so I can notify you when we have space.

Yes. That would be lovely, Cherie. I will send you my personal email. Thank you for your interest and information.

Chris

I wonder how many neuros have/end up with MS...

I know of one who was diagnosed in the 4th year of his residency. Worked for 5 years after diagnosis and then went part time in a practice and now is a consultant for the drug company that makes the med he is on. The other docs with MS that I know are an internist and pediatrician.

An open forum, where all of us could read would be nice too.:) Why do you want to hide.:D

I don't think it's a matter of wanting to hide. In my case, when someone knows my training, it seems I am held to a higher standard. I have MS too and I should have the same ability to receive community support as you do. I have not found that to be possible in open forum. It has been possible in a closed professional forum where we each come to the table with training that should make us knowledgable but we are still attacked. We are people stripped of our knowledge and needing support and those who do not have that training do not understand and we languish. We do not have the support offered to the general community because we SHOULD know the answers.

We SHOULD not whine. We SHOULD not fret or worry. Because we SHOULD know better. As nice and warm and accepting as the MS community is...it chews those of us who SHOULD have knowledge up and spits us out and wonders why we get defensive or feel hurt.


That is why we need a separate community where we can share with each other without the rest of the MS community watching and listening and judging and pronouncing sentence.

Interesting you feel that way Cherie.

I don't even trust doctors to know the answers about this disease, let alone nurses. :p I've seen some VERY poor advice given by doctors on a few of the MS boards. I would hope that everyone would take any information they receive with a grain of salt.

(Well, except maybe KingRex's ;) )

Cherie

I am not talking about receiving advice here at all. I am talking about the verbal attacks that I personally (and many other medical professionals with MS must) endure when on a board of this nature where people know what we are trained in.

Perhaps people are angry that they have to live with MS. Maybe they've had an insensitive or uncaring Dr or nurse. Perhaps they distrust the medical community in general. Those of us who disclose (or others have done so without our permission) tend to take the brunt of anger and judgement and hostility of those persons who have MS and have not gotten a timely diagosis or treatment. Or perhaps have not developed a warm, caring compassionate relationship with their medical provider.

This lack of understanding that you express and do not understand is EXACTLY why we need a forum of our own where we can commiserate with each other. That way we can come back here as PWMS and be part of the community and perhaps offer insights or bring our concerns to the table. We do not want to have to be "on call" or the "experts" with this community (or any other, for that matter).

Does anyone out there even have a clue what it's like to be a medical professional receiving a diagnosis of MS, go on a DMT and never have anyone come and teach you how to give an injection or manage side effects or site reactions because you are a medical professional and should automatically know how to manage? I thought not!

Wow Cherie, had no idea you felt that way about us. In all honesty, I think that there are very few people, here, who think that way about you. I think your perception of this is not correct. I know that I don't think of you as a nurse with all the answers. I think of you as a very nice lady with MS.

Could it be that you put yourself up there, perhaps knowing all the answers and when someone disagrees with you, you take that as a personal attack, when it was not meant that way, at all?

If you feel the need to communicate with other Nurses, then please do, but please, don't lay a guilt trip on us other nice people with MS. We don't need the extra burden.:eek:

Sally,
Not guilt tripping anyone. Just stating a fact that a number of medical professionals have communicated. They cannot be part of a community without hiding their education. So....a forum or chat or private communication provides support we need allowing us to stay "real" and not hiding a part of who we are.

Yes, I am a "nice lady with MS". I am one of the nicest and most loving and caring people you will probably ever meet. But people do not allow me to make mistakes or misquote or ask questions once they know my background so I am not allowed to make mistatements or mistakes as you or others are....and neither are those who admit to having a medical background.

Sally,
I think Cherie hit the nail on the head when she said, "we should not whine". As nurses, we are taught and trained to take care of others, and often our feelings are thrown into the wind. I don't think any of us are better than any of you. We MIGHT be better than some of the physicians who take care of us.;)

But, to know that we are not alone would make me feel like I have the right to be angry and to whine. I feel hesitant to do so in public, because as the nurturers in our profession we tend to take care of others. There are times that we feel that we need to be taken care of ourselves, but don't know how to ask for the assistance.

I hope that gives you a better understanding of where I was coming from. This wasn't meant to say that we are any more special than anyone else. I also just wondered WHY I have been noticing an increase in the numbers of nurses diagnosed with MS. As someone pointed out yesterday, nursing and teaching are typically all female professions, and we are aware that MS strikes females at a much higher rate than it does males.

Chris

I understand what you are saying about the whine thingy, but that's in your minds, not in ours. I happen to think that nurses have just as much right to whine about this carpy disease as anyone else. I think that the other PWMS feel the same way.

As far as having all the answers because you are nurses, you don't, and I certainly don't try to put that burden on you and you shouldn't put it on yourselves either.

We PWMS have become pretty wise, due to all the info on the Net, and most of us don't even fully trust our Docs to give us the straight dope. Sometimes we have to educate them on what's up.:D

I think you should have your forum. Anything that will help you all get through this monster disease.:)

Cherie, Chris and any other medical professional who might happen across these boards - I for one do not see you as nurses but as people, first and foremost. Therefore as people you are entitled to experience and feel the same frustrations, fears, anger, upset, confusion and angst as anyone else.
I used to be a professional too before I was told by the profession that people with MS or any visible disabilities are no longer welcome in the profession. It was very hard to lose that identity and lose my sense of self in that respect. Maybe, just maybe, part of the frustration and anger you are feeling is down to that loss. Then again maybe not, what do I know.

All I can say is I personally welcome and embrace you for WHO you are, not what you've done with your life professionally. I don't expect any more or less from you because of your medical training - quite frankly one has nothing to do with the other.

I'm sorry you've been the target of ignorance, but please don't lump us all in that same pile. It makes me angry to hear that you've been treated this way because you have a nursing background, that's crap and the ones in the wrong should be told it. Please stick around, your input is valued.

As a former RN, sometimes I prefer not to let my RN be known when I am speaking. I sometimes don't understand nurse speak anymore. At other times, I want my families health professionals to know that I am an RN and they better know who they are dealing with. I hate it when health professionals look and talk to me instead of my Mom or whoever. My Mom is a competent individual who deserves to be spoken to and not through me.