Nurses with MS or similar disorders

  1. I went to my PCP today and I seem to be having some s/sx that are suggestive of Multiple Sclerosis (MS). He has referred me to a neurologist for further testing. I did some online research about the disorder, etc. I know it affects people to varying degrees. I know that there is nothing I can do now but wait for a definite diagnosis, but one can't help but worry in situations like this. I guess my main fear is how it could possibly affect my ability to work...I have come so far to obtain my license. I need a little encouragement. Are there any nurses that have MS with positive stories they would like to share? I'm not seeking any medical advice...just some personal experiences that might make me feel better right now.
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  2. 32 Comments

  3. by   TazziRN
    I have nothing but hugs to offer.........:icon_hug:
  4. by   EricJRN
    No personal experience with MS, but just know that our thoughts are with you as you deal with these troubling symptoms.
  5. by   ParrotHeadRN
    My partner has MS and worked for 10 years after her diagnosis. If you'd like to PM me, we can talk. I'm sending good wishes your way.
  6. by   Mags4711
    I have worked with two nurses with MS over the years, one has left ICU nursing because it was just too stressful on her body (but she is also about 140lbs overweight, that and the MS took it's toll), the other is a 60-something year old woman (also overweight, but only by about 70lbs) who worked in a burn unit for about 20 years after she was diagnosed, she finally retired last year. She swore by a vegetarian diet and read alot about nutrition and its effects on MS. I don't remember any flare-ups that took her off work in the ten years I've known her. But every MS patient is different.

    Sending you lots of good, positive thoughts.
  7. by   jthewood
    My wife was diagnosed with RRMS (relapse-remitting) around 5 years ago. She works as a recreation manager in a busy community coordinating ongoing activities and planning large events. Since her diagnosis and the process of acceptance for both of us, we've had two children, both finished, (or are finishing), school and generally lived our lives to the fullest. Sure, there are and always will be limitations, but I've learned to enjoy our life together within the limitations. She keeps in regular contact with her neurologist and we try to maintain a healthy diet along with regular exercise. Believe me, I know this is hard and scary right now, but there is hope. If you are diagnosed with MS, there are many treatment options available and support groups to help you understand the disease.

    Remember, one of the best treatments for any condition is a positive attitude. Prior to my wife's definitive diagnosis our options were MS or possibly a tumor....we were glad to get the MS dx. Try your best to have faith, (whatever your faith may be), and remember to count your blessings. You'll be in our prayers.
    Jason
  8. by   Jules A
    Quote from jthewood
    Sure, there are and always will be limitations, but I've learned to enjoy our life together within the limitations. She keeps in regular contact with her neurologist and we try to maintain a healthy diet along with regular exercise. Believe me, I know this is hard and scary right now, but there is hope. If you are diagnosed with MS, there are many treatment options available and support groups to help you understand the disease.

    Remember, one of the best treatments for any condition is a positive attitude.Jason
    :yeahthat:


    Sending good vibes your way, please keep us posted. Jules
  9. by   nurse4theplanet
    Thank you very much for all your replies. I will continue to update you on what I find out.
  10. by   nurse4theplanet
    Okay, so I went to see the neurologist today. Doc did a quick exam and then they did an EMG. Actually, they just got through the first part, testing the nerves, and the power went out in the facility!

    I had tears streaming down my face because #1 I was nervous, #2 the Doc was abrupt and not friendly, and #3 the nerve stimulation was very painful. Then when the power went out, I asked the nurse (or tech...I'm not sure who she was) if we were going to have to start over and she just rolled her eyes. Then after a few minutes she finally gave me an answer...Yes...and left the room.

    The next thing I know, the doc comes in...says everything is fine and writes me a script for Lyrica. It's for neurological pain. He told me that it was probably nothing more than anxiety and to come back if it got worse.

    My mind went blank. I just took the script and a sample and left in a daze. I felt like I had been blown off. I WANTED to know that everything was okay, I don't want to be sick...but I don't feel like they took me seriously either. I don't know what I was expecting, if I was expecting anything at all, but I just don't feel good about the visit. Am I crazy?

    #1 It is NOT in my head, nor is it anxiety. I am having real symptoms that someone my age should not be experiencing unless something is not right. If it WAS anxiety, my symptoms would have started a looooong time ago...like when hubby was in Iraq or I thought we were divorcing and I had no money and nowhere to go or when I almost flunked out of nursing school for absentism during the whole bit....NOT NOW when everything is great...finished with school, passed NCLEX, and financially stable.

    #2 Lyrica? It's for nerve pain AND I'm not having nerve pain. AND you can't take it if you are trying to get pregnant AND I am trying to get pregnant. Did he ask that? No. I think it was more of an effort to pacify me than anything else. Like if I left with something in my hand then I would feel like I was properly treated.

    There is no telling how much this visit cost me...and I feel like I got nothing from it. Getting a second oppinion is just going to cost me more...but what if something is wrong? Then again, what if it is nothing and I waste more money to be told the same thing. I hate seeing doctors, and I hate it even worse when they find out I'm a nurse. It's like I get treated much differently...like I'm some kind of hypochondriac.
    Last edit by nurse4theplanet on Feb 27, '07
  11. by   NRSKarenRN
    My MIL was DX with MS in 1951 ~ age 28, my DH was born in 1953. By her mid 40's she was blind in 1 eye and had partial paralysis +battled depression over DX.---started on steroids. At age 52 in remission, went to LPN program graduating age 53 and worked busy Medical floor till age 65.... she lived to age 74, 10 years after DX of Ovarian CA (told she had only 5-8 weeks originally).

    Seek second opinion. Sometimes diagnostic symptoms not readily apparent first exam. You need a definative diagnosis and appropriate treatment before considering pregnancy. Also look at preconception counseling.
    Anxiety/nerves can mimmic this condition.

    Hope you find a physician that you can work with to optimize your health.
    With my MIL, change in attititude to " I can do this" + good medical followup greatly enriched her life.

    Still have her fellow nurses 16 years after her death tell me they think of her and miss "Nurse Nancy."
  12. by   NRSKarenRN
    My MIL was DX with MS in 1951 ~ age 28, my DH was born in 1953. By her mid 40's she was blind in 1 eye and had partial paralysis +battled depression over DX.---started on steroids. At age 52 in remission, went to LPN program graduating age 53 and worked busy Medical floor till age 65.... she lived to age 74, 10 years after DX of Ovarian CA (told she had only 5-8 weeks originally).

    Seek second opinion. Sometimes diagnostic symptoms not readily apparent first exam. You need a definative diagnosis and appropriate treatment before considering pregnancy. Also look at preconception counseling.
    Anxiety/nerves can mimmic this condition.

    Hope you find a physician that you can work with to optimize your health.
    With my MIL, change in attititude to " I can do this" + good medical followup greatly enriched her life.

    Still have her fellow nurses 16 years after her death tell me they think of her and miss "Nurse Nancy."
  13. by   walkingonsunshine
    MS is hard to diagnose sometimes. Did you have an MRI and a spinal tap? How about an Visual Evoked Potentials test? If you haven't done those, I would think about doing them.

    I went through all of that and was told that if my symptoms continued we would want to retest everything in 6 months or so.

    If you ever do get diagnosed with MS, please read about low-dose naltrexone. It is wonderful!!! It is also used for other auto-immune diseases. I have fibromyalgia and low dose naltrexone has saved my quality of life!! LDN has made people with MS who did not respond to the traditional meds go into remission with no or very few exacerbations and MRI proven reduced lesions.
    Last edit by walkingonsunshine on Feb 28, '07
  14. by   TracyB,RN
    What about REBIF injections? Are those still being used. I believe to slow the progression of MS??

    Go for the 2nd opinion. Even though expensive, worth the money if it gets you a doctor with some compassion & who will actually explain things to you, if NOT ms & hopefully proper treatment if it IS ms.

    Good luck.

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