Multiple Sclerosis

Nurses Disabilities

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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

Specializes in Oncology, NZursing Home, Community Healt.

Thanks! I am looking.

Are you all still out there? I don't have a dx yet, but my foot has been numb with pins and needles for 2 weeks now, and it's happened to my arm two other times in the last several years. I had the MRI yesterday, but with the holidays and all I don't get to find out the results until Wednesday. I also start the 3rd semester of my 4 semester accelerated BSN program on 1/7, and among other things to worry about, I have no idea how I can do a 12 and an 8 hour day at the hospital in clinical each week when I can barely walk without falling down. I got an ankle brace, but it's uncomfortable to wear with shoes. I'm 28 years old, married a little over 2 years, and no kids yet - we were planning on starting a family as soon as I graduate. Now I don't even know if we should bother if I have MS.

I also think I may have to reevaluate my career goals - I have wanted to be a CRNA since before I started nursing school, and I'm #1 in my class so I thought it was a realistic goal - now do I have to give up my dream just because I might have a disease? I know I shouldn't make any life altering decisions until I have a dx, but it seems like that might take a while. I haven't even been referred to a neurologist yet, I'm still seeing my primary NP. I assume she'll refer me (or I'll ask her to) once we get the MRI results. Even if it's something else, I still have a numb foot - how do you all get through 12 hour shifts on the floors? My arm has gotten better on its own in the past, so I'm hoping my foot will too, but it took 6-8 weeks before. If I do too much walking, it starts to cramp up and contract, and causes a lot of pain (to the point where I'm in tears). My clinical instructor has failed one person in our group, and a major reason was that he started to have problems with his cervical vertebrae - she didn't feel he could physically handle the job. So, I don't really want to disclose anything to her and ask for accomodations - she doesn't seem to believe in them, ADA or no. Any advice from anyone? I don't really know where to go. I've been reading a lot of articles online in the past few days, I've found the National MS society and all that, I just don't have anyone to talk to about it who even really knows what the disease is. How did you all deal with the uncertainty before dx? Thanks, and sorry this was so long...

Specializes in Family Nurse Practitioner.

Hi MB37,

I surely hope you don't have MS and really there are so many things that can mimic it. Did your doc do blood testing for things like B12 deficiency and Lyme disease? If you do get a diagnosis I'd just keep plugging along and finish school. You can worry about the other stuff as it comes along. If you truly can't be on your feet for 8 or 12 hours you will have to find another type of job which shouldn't be too hard with your RN. Telephonic nursing is one example.

Check out MS World Forums for more information and support from other people with MS. Hang in there, Jules

Thanks for the reply Jules! I actually went to my NP today, and she said that there were no lesions on my MRI. I know that's not conclusive evidence of not having MS, but it's improbable now. We still don't know why my foot is numb, but they did a ton of lab work today (including B12, Lyme, Guillian Barre, EBV and a CMP and other stuff). They're going to copy me with results, so I can at least look up what they mean if it takes a little longer to get an appointment. I also scheduled an EMG and got a referral to a neurologist, but i have to wait for their scheduling person to contact me. I guess my mother has had a few episodes of random facial and extremity numbness, and she was never able to get a dx - the symptoms always resolved on their own though. Maybe there's just some type of tendency for nerve problems that runs in my family? I'm going to try to power through clinicals next week, and hopefully I'll eventually start to get some feeling back...thank you though.

I was diagnosed with MS in June 2007. I had numbess amd tingling in my legs/feet for about 2 weeks and was diagnosed with an MRI only as I had 10 lesions in my brain and 1 in my spinal column. I had been working as a ER nurse until December 2006 and was having a lot of issues with feeling dizzy and nauseous. I was also extremely fatigued all the time, sometimes sleeping up to 16 hours a day (I work nights) and not feeling like I'd slept at all.

I work psych ER right now (started January 2007 before dx) so the work isn't heavy at all and thankfully I have next to no residual symptoms. (Although lately I've noticed on and off tingling in one leg and occasional dizziness). I plan on moving to the OR in about 6 months and hope that the added stress doesn't cause flairs.

I was on Rebif from June '07 to December '07 when I was switched to Copaxone due to my liver enzymes showing consistent elevation and beign 3-4x the norm. Copaxone doesn't hurt nearly as bad as Rebif did to inject, although I do get lumps in some injection areas. Mine usually remain about the size of marbles though. They go away in soem places, the ones in my tummy seem like their here to stay.

Specializes in Family Nurse Practitioner.

Hi New2er,

One thing I love about nursing is the flexibility we have to change areas if necessary. Hope you continue to feel good, hang in there, Jules

Specializes in Home health, managment in CILA, peds, LT.

I started to develop neurological problems after the birth of my 3rd child this past December. Symptoms started in late February. It started with my hands. I was awakening with severe pain to burning in my hands. The burning alternated back and forth. My hands became very weak to where I have started to drop things constantly. I feel like a cluts. I'm scared to carry my new baby girl around in fear that I will drop her. I have lost sensation to my hands and finger tips. My M.D. said that it was possible that I had corporal tunnel and had me get hand splints to wear at night to help with the positioning of my hands. I even bought some soft splints to wear in the daytime. He put me on Vicodin 5/500mg 2 PRN every 6 hrs for the pain. He did some blood work to make sure my b-12 and my CBC, and thyroid was normal. My b-12 did come back a little low at 179 normal is 211 he said. I had gastric bypass 3 ½ years ago and am suppose to do a b-12 injection monthly for life but I hadn't done it in a few months because of the business of being a new mom. So I went write back to doing my b-12. The hand pain became worse and I returned to my DR. He then ordered a corporal tunnel test. That showed negative results. He was lost with what was going on with me. He then ordered sed rate blood work. It also came back normal. He then sent me to a referring Neurologist. Oh God if I have ever wanted to tell a Dr Where to stick it this would be the one. By the time I got in to see him I started with other symptoms such as twitching in my right eye, numbness in my right leg and no feeling in my toes which I have had for years but just thought it was normal, and severe fatigue that was just overwhelming. By this time I had to be taken off work because I am home health nurse that travels all day and the driving made things worse. He told me that it could be possible that I have mild corporal tunnel syndrome that's not showing up on the test. He said for me to just go home wear the hands splints and takes some anti-inflammatory. I repeatedly told him I couldn't take because of the sensitive stomach R/T the gastric bypass. Needless to say I didn't get any explanations of what was causing my problems.

Problems continued so I went back to my primary Dr. I started having burning across my upper chest and shoulders. I have pain in the back of my neck. My feet become numb. My legs are so weak some days without the pain med I can't get going. I hate to depend on a narcotic to take care of my family but it works. I have severe burning that moves about my body mostly in my legs and shoulders. I have pain in my legs. My lower back has started to hurt. I lose my vision on and off in my left eye. I coordination is poor. I walk into things all the time. My M.D ordered a MRI of brain cervical spine without the contrast. The cervical was normal but the brain there was a single small focus of signal alteration left parietal lobe periventricular white matter of uncertain etiology. My M.D then referred me to another Neurologist to be evaluated for MS. I seen this Neurologist and reported all my symptoms to him he reviewed the MRI scan and stated that he didn't think I had MS but thought I had some sort of immune disorder such as Lupus. He then said that after he got all the records from my primary he would start testing to try and get to the bottom of things. He left the dx as neuritis. He then called me a few days later wanting to do a more detailed test for corporal tunnel when I ask what the cost would be his receptionist told me it would be thousands of dollars and when asking how many thousands she couldn't give me a straight answer. I told her that I would keep the appointment for the time being but that I was going to look for a specialist that would look more into the whole symptoms that I am having. So the following day she called me back and stated that the neurologist didn't want to see me and they referred me to a neurologist that specializes in MS. By this time I was tired and frustrated. I then decided to start asking around to people that I know that have MS and if they liked their neurologist. I had spoken to one girl that has had MS for 7 years and she said she had many of the same symptoms. She told me that my MRI should have been dome with contrast that it shows more detailed. So at this time my primary is continues to treat all my symptoms while I wait to get into a specialty clinic at Barnes-Jewish. He recently added Lyrica 75mg 2 x a day. I hate the way it makes me feel. It has caused my stomach to bloat like I'm pregnant, gas and diarrhea. I have electrical sensations that shot out all through my extremities. My skin is super sensitive, I started to loss my hair and I have tingling along the sides of my face. I also take Cymbalta 60mg daily for the depression caused from the emotional distress this has put on my life. I take all sorts of other vitamins, B-6, B-complex, folic acid, iron, and multi vitamin. I feel guilty that I have had to depend on my family for so much as before everyone looked to me as the helper. My husband has had to take on extra work around the house because I just can't even do the things I use to be able to do so easily. I have a 2 story house that I have neglected the second floor because it exhausts me to climb the steps and my legs hurt so bad some days. My family has been really supportive and there is a few times where I lost total feeling in my right side that scared me to death. I was home alone with the baby and my sister came right over to help me. I try to make the best of everyday. I spend most of my time at home enjoying the baby. If I get out for a day I pay for it for several days after with serious fatigue and pain. I'm disappointed in the fact that I may never get back to the job as a nurse doing what I most loved. I never though that I would be put down like this with an illness. I'm sorry the post is so long but I was looking to vent all my recent problems and looking for anyone to talk to about it.

Specializes in open heart recovery & critical care.

My sister is going to be 55 this year and was diagnosed when she was 35. She is a high school teacher and never stopped working. She gives herself an injection once a week and has remained in the very first stage of MS - thanks to her doctor in Indianapolis. This specialist is known around the world and gives great lectures and mentors physicians that are going to work at mayo and cleveland clinic. Don't get me wrong - she has had incidents but realizes when she is not feeling well. Keep up with all the latest new meds and when your down reach out for others to give you strength. Life has many trials for each of us to endure - you are not alone. You will touch others in many ways that others have no idea how to start...thinking of you. :nuke:

Specializes in Emergency Nursing, Cardiology.

" I was on Rebif from June '07 to December '07 when I was switched to Copaxone due to my liver enzymes showing consistent elevation and beign 3-4x the norm. Copaxone doesn't hurt nearly as bad as Rebif did to inject, although I do get lumps in some injection areas. Mine usually remain about the size of marbles though. They go away in soem places, the ones in my tummy seem like their here to stay."

Hi,

This happened to me on rebif and I had to switch to copaxone, too. I know that many people do fine with rebif, but my liver ezymes were 10x normal.

I stopped injecting Copaxone in my abdomen because the injection bumps seem larger there. I use other sites instead. I've been using copaxone for a year and have had no relapses since my first exacerbation in Oct. 2006.

Robin

Specializes in Emergency Nursing, Cardiology.

Hi Everyone,

Its now been 18 months since my diagnosis and I feel like it's time for me to step outside myself and MY diagnosis and start helping others with MS. I've started a Blog as a first step. I try to write when I can. When I was first diagnosed it helped so much to hear from or about others who were living successfully with MS. That is the purpose of my blog. Check it out:

http://survivingms.blogspot.com/

Robin :wink2:

Specializes in Oncology, NZursing Home, Community Healt.

Your story sounds so familiar. My MS symptoms started in 2000 as I look back. I was first diagnosed with carpal tunnel, then a pinched nerve in my neck, then sciatica from my three C-sections and finally MS in July of 2007. It was a stunning blow as a mother of three and a wife. Then I had to regroup for me and my children. I started Rebif the next month and had been taking it fine until I noticed bruises on my legs (not the injection sites) and severe depression. With children we have to acknowledge this diagnosis and keep going to the best of our abilities. I now have mobility problems and hopefully will be starting PT soon. I am a case manager for home health but am currently seeking a job that requires little to no physical activity for me. The field visits and the long drives are too much for me. Keep your head up and pray.

I was diagnosed with multiple sclerosis Aug 2006, while I was travel nursing in AZ. I spent about 5 days in the hospital, getting tests and IV solumedrol, PT, etc. First sign was in May 06 when I woke up one morning with numbness in my entire left side. A few days went by, I kept the idea the it was just a nerve irritated.

I went back to work about a week after getting out of the hospital, I had made big improvement. Well in reality I wasn't doing as well as I thought, I worked different hospitals till I figured out what I was going to do. There were many places to work within the same health system.

I realized in Sept 06, that I just needed to go home to be with family to help us (husband, two boys) till I got stable.

I started my last job Aug 07 and was doing really well, nobody could tell that I had MS. Then April 27 08 came, had some flaring symptoms causing me to leave work around 1 or 2pm Sunday. Next day I was in the hospital, MRI and Solumedrol IV to be done, also some PT.

Gosh, what a mess I am. May 1st I had a Pain Treatment physician see me b/c of all the pain I was having in my lower back, hips, legs. I got a epidural steroid injection in the lower lumbar area. Return to visit the neuro doc, now a nerve conduction/EMG test (had one in AZ) well now I have neuropathy in both legs, great news for me. Also was diagnosed with a bad disc in that lumbar area, by next pain appointment I was to have another epidural steroid injection which during procedure scar tissue was found.

I haven't worked since April 27th, I am getting disability through personal benefit through the hospital. I have stress about what job will I be able to do now and where will it be??? I am too weak and have pain that restricts me to work on the floor with patients. I also can't imagine the stress, walking, others to go back nursing on a unit.

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