Multiple Sclerosis

[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

[Spidey's mom, ADN, BSN, RN]

I appreciate this thread because even though the neurologist says I don't have MS and I have no symptoms other than having two seizures, I do have lesions that look like I've had little strokes. He has no idea what they are - or how long I've had them. I have no deficits. He says if I was in my 60's he would say I've had a stroke . . . scary.

steph

[Jules A, MSN]

I appreciate this thread because even though the neurologist says I don't have MS and I have no symptoms other than having two seizures, I do have lesions that look like I've had little strokes. He has no idea what they are - or how long I've had them. I have no deficits. He says if I was in my 60's he would say I've had a stroke . . . scary.

steph

Steph,

Have you seen an MS specialist? People can have MS with none or very few flares for years. Frankly your brain should have zero lesions and I'd continue trying to find out why it does so you can weigh your options. Best to you, Jules

[Spidey's mom, ADN, BSN, RN]

Steph,

Have you seen an MS specialist? People can have MS with none or very few flares for years. Frankly your brain should have zero lesions and I'd continue trying to find out why it does so you can weigh your options. Best to you, Jules

Yes, this neurologist is also a specialist in MS. He is an awesome doc.

I know I should have zero lesions . . .it does freak me out when I can't find my car keys or I forget a doctor's appt.

We do follow up MRI's . ... no changes. I appreciate your post.

steph

[renge1]

Hello Everyone,

sorry duplicate post, see below

[renge1]

Hello Everyone,

I am glad this thread was started....It is nice to have other nurses to share with. I was diagnosed with MS in May 05, 1wk before my 38th birthday. I numbness in my feet from 5/03 to 5/05. I never went to the dr. (no health ins) i attempted to dx myself.........at times i thought i had a stroke do to facial drooping and drooling at times i could not even hold a pencil and my writing would look as if a child had be doing writing. I finally got medical ins in Jan 05......and what got me to the dr was pain and blurred vision in my right eye. At the time i did wear contact lens so i figured it was time for another exam. My optomologist immediately referred me to a neuro optomologist. The neuro optomologist sent me for xrays, blood work and mri's........but based on her exam of me and my telling her my sx........she told me she thought i had sarcodosis, but if i were caucasian she would think it was MS. I was told that i would be called witht he mri results...at this time i had been and LPN for 10 years and had taken care of MS patients, never thinking i would become one of my own pt.........needless to say i was given the news a week later =MS= referred to a neurologist who started me on rebif injections. It has been a little over 2 years now, My numbness in my feet has decreased and my vision has gotten much better. I started a new job this past march and my employer does not now about my dx. I just thought it better not to tell them. My days are often stressful. I work 3 12 hour shifts. I am in RN school. I often wonder what is the purpose and that i should get a office job just so i am not on my feet at much. I have supportive friends and family and that i am greatful for. I often wonder what the future holds.....I just take one day at a time, and greatful everyday that i am able to walk. I would like to connect with you all..............nursing is such a hard job. we have to support and take care one another

Linda

[kmrmom42]

Thanks everyone for sharing your stories, they have been very uplifting to read. What a strong and courageous bunch of nurses!

I have a question, for those of you who have had optic neuritis, have you had any long term effects? I have not gotten the vision back completely in the eye most recently affected and I am wondering if it will ever come back or if the nerve damage is permanent?

[kmrmom42]

Steph,

Where were those lesions? If they are in the white matter of the brain they might indeed be related to MS but if they are in the gray matter then it is probably something else. Did the doc tell you this detail about your MRI?

Karen

[kmrmom42]

Linda,

Don't give up on nursing! There are so many areas of nursing that you can work in that don't require being on your feet all the time. Hang in there and the right job will come to you.

Karen

[kmrmom42]

Ex Techie,

Everyone always tells me that it is stress that causes me to have exacerbations but I am not really sure that is true. They just seem to come whenever. Life always has stress and you can always blame something but I am not sure that this is true. What does everyone else think?

Karen

[iwanna]

Wow, these stories are absolutely inspirational. I do not have MS, but I had an aunt that had it. And, I know that Montel Williams has it. One of my best friends may have it. The drs. are quite certain that she has MS and hat she will never work again. She is an RN, but has not worked in years. She has a case still ongoing with workmen's comp in CA. She has the absolute longest case ever going in CA. She slipped and fell at work, but then the possbile MS dx came up. So, now they are thinking perhaps she fell due to MS, and not the negligence of warning "wet floor".

I am an LPN with sarcoidosis. I have not worked in three years. And, I did not have much experience before that. I only worked about 6 years, and it was in behavioral health field. Well, I lasted 3 months in a nursing home.(my first job - way too strenuous)Then, I found a job in a drug rehab that lasted 18 mos., then I worked in psych hospital for 4 years.

I started out by going to be an RN, however, towards the end of my junior level, I became overwhelmed with fatigue. I was overwhelmed with all of the work with school, and preparing for pre-clinicals, and the post clinical work, then studying for the tests. I was totally exhausted and could not handle it. I failed my last course of junior level.

So, then I went to LPN school for 12 weeks(actually only 10 for me). I became very ill and went to hospital two weeks before I was to graduate from LPN program. I was in hospital for 25 days. I was diagnosed with sarcoidosis. I took my boards in March 1997. My first job was in May 1997, and I left in August 1997. I was too weak to handle nursing then. After that, I obtained a job at a drug rehab. They closed about 18 months after I started. Then I got a job in psych hospital. I went on medical leave summer of 03 and collected STD. Then I returned to work Feb. 04, then had to leave in June 04.

I feel like my sarcoid is pretty much stabilized. However, I am on immunosuppressants and pick up every germ. I am on methotrexate. Everytime my grandbaby gets a cold, I get it too. Nothing serious, just a cold. But, I don't think that I would be able to return to nursing being around sick people. Although, a cold is no big deal, I have also had the chkn pox(and had full blown cse as a child). Then, a year later I had shingles.

So, I am limited with my LPN. My sister said that there is a nurse that does chart reviews, but I cannnot do it because I am only an LPN. And, I know of another RN tht works from home doing insurance work.

I was kind of thinking getting my RN via online, and not actually doing clinical nursing. I am 50 yrs. old already. I was so close to getting my RN, and had under a year to go. I really enjoy looking on this site, and trying to recall my days back in nursing school.

I am currently on SS and disability from my former employer. I can go through Vocational rehab, however, I am sure they will not help me get an RN. I looked into it, after I lost my job at the drug rehab.

MY husband wants me take income tax classes, so I can do other peolpe's taxes. Yuck, I always want a cigarette every tax season. I do mine and family memebers. I hate working with numbers.

[kmrmom42]

I am an LPN with sarcoidosis. I have not worked in three years.

I have only known one person with sarcoidosis but he really had a hard time with the meds he was on as much as anything. He was our night scrub tech and when he wasn't scrubbing a c-section with us he was basically our unit secretary and stocked our rooms etc. I thought of him when I had to be on high doses of steriods for my last exacerbation. Prednisone makes me SOOO miserable (it makes other people feel better, me it knocks on my butt). He hated the prednisone so much he weaned himself off against his docs advice.

Anyway, I wasn't really intending to tell you his whole story, what I really wanted to say was that I was thinking about what you could do to make money within nursing and I thought of home health. When I was a Case Manager in a Home Health agency many years ago I would always see people who had been hired to stay in thehome with my patient to help them out. Hired privately by the family, not through my agency.

They were private duty aides or nurses depending on what the patient needed. Sometimes they lived 24-7 in the home with the person but sometimes one person took the daytime and the other took the night. I don't know how you find a job like this but I was thinking that it might be perfect for you. Only one patient to care for, they probably won't have anything communicable and you can still be a nurse!

Just a thought. Good luck!

Karen

[RN1263]

I'm a new grad R.N. and I have had M.S. since 1991 (I was 21 yrs. old). I was having several attacks per year, I've taken almost all of the injections for M.S. but they all had side effects for me.

My condition stablized 3 yrs. ago, so I told my doc no more injections for me I'll take my chances w/ out it and I decided to go to nursing school (something I always wanted to do) and I had one minor relapse 6 mos. before the nursing program and only have mild symptoms from time to time.