by kmrmom42

After spending 25 minutes scanning through the messages to find others diagnosed with MS I decided that maybe it would be best to start a new thread specifically for those with the condition so we can find each other.
I was diagnosed with MS back in May of 1996. I was 40 years old, had three kids ages 16, 14 and 12 and had just graduated from nursing school. I took the NCLEX two weeks after being diagnosed. As I took the exam I wondered why I was bothering.....
But now I KNOW why! I went into remission where I stayed until recently. Fortunately prior to having my latest exacerbation I had completed my MSN and was employed as a Perinatal Educator. I don't have to do a lot of bedside nursing but I do spend a lot of time using the computer which can be hard due to the residual nerve damage from my latest bout of optic neuritis.
I am single now and almost 51 years old and worried about how I will manage to continue to support myself until l can retire. Who knows when that will be because, foolishly, I thought I would still be married and would be sharing the retirement burden with my husband. Sigh.
Anyway, I was just interested in talking with others with this disease, to see how you are doing and how you are managing.
Thanks for listening to anyone who had the interest to read to the end of my post!
Karen

Re: Multiple Sclerosis

Don't have the disease, Karen, but have known many who have.

Kudos to you for continuing on with working and living. So many people, MS aside, lay down and give up.

I don't have your retirement answers.

{{{Karen}}}

Re: Multiple Sclerosis

Same here Karen. I'm 42 with often active SLE, recently divorced, and wondering what tha heck I'm going to do about retirement (since the Florida lottery doesn't seem to be paying off in my direction any time soon, haha!).

Susan

Re: Multiple Sclerosis

Maybe we can go back to communal living like the 60s and 70s! We can have a divorced, disabled, nurses commune!!

Re: Multiple Sclerosis

Karen:

I am sorry to hear about your MS. I was also diagnosed during nursing school and felt like my life ended. I am 42, graduated in May/07, have two kids 19 and 22. The hardest part is not knowing what I am capable of. I was terrified to take a job and not be able to keep up and have everyone know. I really don't tell anyone that I have this - don't know whether that is right or wrong. I am 3 months into a med-surg position on an extremely high acuity floor. So far...everyone says that I am doing great and was one of the first ones (out of 10 new hires) off of orientation. I just wish I was feeling better. If I ever feel like I am putting my patients at risk, I will get out! Best of luck to you with your situation!!!

Extechie

Re: Multiple Sclerosis

Extechie,
Try not to let it get you down too much. I was surprised to find out how well many people do even with this disease. I was on Betaseron for 3 years but finally I asked my neuro if I could come off of it because I was doing so well. He didn't really want me to but, you know how nurses are, I did it anyway! And I continued to do really well for the next 7 years. I am still doing well except for some visual changes that seem permanent and fatigue...always the fatigue....but otherwise I am okay.
When I was diagnosed I thought for sure that by now I would be severely disabled. Well, surprise, I am not. I have even tried to go to other neuros to see if they will "undiagnose" me. But unfortunately they won't and now that I am having some new problems I guess I can see why, LOL. Hang in there and just try to live every day without thinking too much about the future. Otherwise it is like always waiting for the other shoe to drop and that is no way to live!
Karen

Re: Multiple Sclerosis

Originally Posted by kmrmom42

After spending 25 minutes scanning through the messages to find others diagnosed with MS I decided that maybe it would be best to start a new thread specifically for those with the condition so we can find each other.
I was diagnosed with MS back in May of 1996. I was 40 years old, had three kids ages 16, 14 and 12 and had just graduated from nursing school. I took the NCLEX two weeks after being diagnosed. As I took the exam I wondered why I was bothering.....
But now I KNOW why! I went into remission where I stayed until recently. Fortunately prior to having my latest exacerbation I had completed my MSN and was employed as a Perinatal Educator. I don't have to do a lot of bedside nursing but I do spend a lot of time using the computer which can be hard due to the residual nerve damage from my latest bout of optic neuritis.
I am single now and almost 51 years old and worried about how I will manage to continue to support myself until l can retire. Who knows when that will be because, foolishly, I thought I would still be married and would be sharing the retirement burden with my husband. Sigh.
Anyway, I was just interested in talking with others with this disease, to see how you are doing and how you are managing.
Thanks for listening to anyone who had the interest to read to the end of my post!
Karen

Hello Karen

Im new to this discussion board, but was glad to read someone other than myself have this disease and working as a nurse. I was diagnosed May 2007. My first exascerbation lasted from January 2007 to July 2007, I injured my back at work November 2006 turning a patient that I was preparing to send to CCU.. from then on I began to experience all these neurological problems. I did some research and I brought this information to my doctor and my doctor refused to read it... my doctor said I did not have the disease ( diagnosis without testing) so I changed doctors and all the testing (MRI OF THE BRAIN, EEG, SPINAL TAP, ALL MY NEUROLOGICAL TESTING) all proved that I did have MULTIPLE SCLEROSIS. During my 1st exascerbation I was in sooo much pain, I couldnt walk, slurred speech, blindness in my right eye, numbness and tingling down my right side... I had to walk with a walker and/or cane. My new neurologist started me on AVONEX INJECTIONS... Ive been taking these injections since May 2007 and now I am walking talking and I can see again, Ive been pain free for 2months now...
I had to give up my old nursing position (during the 9 mos of this attack) But now my doctor says I can return to work...
I was afraid to tell the agency about my disease because I thought that would interfere with the hiring process...
To say all of this I want you to know you will be okay... Ive been a widow now for 3years I have 4 children... age 29, 25, 19, and 17 and my children helped me a lot during my exascerbation they took good care for me... You will work and be the nurse you worked soo hard to be... and all things will fall into place... just take one day at a time...
Sometimes life throws us into a frenzy but it all works out.
I will be working starting Sept.2007 with this agency that has placed me in a hospital close to my home... My biggest fear was to start working and find out I could not keep up, but thats not so... Im going to work as a nurse until I cant work as a nurse any more...
Keep you head up...
Jean

Re: Multiple Sclerosis

Hi Karen,

While I do not have MS. It plays a major role in my life. My wife was diagnosed at 19 years old. At the time she asked the doctor to not tell her what it was, if it was bad. So for 5 years she went along not knowing. Until she was in the ED for a migraine and the resident blurted out, so how has the MS been affecting you? What a jerk. So fast forward through two college degrees, one in fine arts and the other a BSN. She is now 44 and continues to work in nursing. Her disability was kept in check with early use of ACTH and methyprednisolone. Then came the ABC drugs. Then Cytoxan to knock immune system down. Now she just takes once a month gram of IV methylpred at home. She did not tell anyone she worked with about her Dx until about 7 years ago when she really had an appreciable ataxia. She has worked in psych the whole time. She works for the State and they have been fantastic to her.
She did not have any "really visible" body disturbances until after we had our daughter almost 6 years ago. She subsequently developed gait issues and has been using a scooter to get around most of the time for about 3 years. Before that she was using a "walking stick" (never, ever call it a cane ). Then to one Canadian crutches.
All of the time she just keeps on smiling and doing her job. When her position changed and she began running her own clinic, the higher ups ensured that it was built around her abilities and needs. It does not even click to many that she is in a scooter to get around. As soon as she speaks, her expertise supersedes any apparent shortcoming. Someone put a name sign on her door that reads "Karen RN, Just ask me" She is the go to person for many people.

Sorry if this is too long. But, I guess my points are:
a) If she had told people about her Dx early on, I know they would have treated her differently. Her manager was the only one who knew. I don't know if she would be where she is now if she had.
b) Don't let a DX get in your way of continuing your dream career. Nursing is amazing. Don't slam the door on yourself.
c) Examine opportunities in areas of Nursing that don't require whatever physical deficit you might be experiencing.
d) Never let the Dx "win". My Karen doesn't ever do this.
e) Again, be very careful who knows about this. Asking for help is always an option. Remember, we all need help with patients now and then.

Good Luck,
Email me if I can help more. See my profile.

Brian RN

Re: Multiple Sclerosis

I don't have MS but was accused of having it.

4 years ago I had a seizure at work. Had a full work-up, no cause found. No meds.

3 months later I had another seizure at work. (Allergy to work perhaps?) Another full work-up . . .but the funny thing was when I went for my MRI, the tech was perusing my file and asked me "How is your MS doing?". What?

When I went back to the neurologist, I told him this story and he was mad that the tech made a diagnosis on his own. Or maybe he was reading possible causes? I dunno . . . I do worry sometimes, with the high rate of misdiagnosis, that I may actually have it.

As to working with a chronic illness . . I've decided to continue on medication even though my neuro says I can wean off and stop. I have no negative side effects from taking it and I'd rather be safe than sorry and have a seizure while driving with my 6 year old.

It strikes me as lucky but intriguing that I had my seizures at work.

steph

Re: Multiple Sclerosis

I was diagnosed May '06 after being sent to the ER during my shift b/c I couldn't see. After the MRI, I was diagnosed with optic neuritis and referred to a neurologist four days later. I was officially diagnosed then w/o the spinal tap; I had more than 10 lesions on my brain and several in my cervical spine.

I started on Avonex in June '06 and experienced seizures and severe mobility and cognitive issues almost immediately after the injection. My neurologist didn't want to listen to me and refused to take me off the medication for several months. I fired him and found a wonderful neurologist who listened to my concerns. I was started on Copaxone January '07.

Unfortunately, I have had multiple exacerbations over the past year including four rounds of optic neuritis, vertigo, diplopia, cognitive problems, bowel & bladder issues, and mobility problems (I walk with a cane & I'm thinking about taking up my neuro's offer for other assistive devices). My last MRI in June revealed a more advanced stage of MS - according to the report - and stated I had four times the lesions than originally noted on the MRI done last August. My neuro took me off Copaxone a few days ago in anticipation of starting Tysabri in a month. In the mean time, I'm off work on short-term disability. I'm trying to recover from my latest flare.

For everyone with MS, hang in there. It's tough, but keep a positive outlook on life!

SherBear