nurses with multiple sclerosis - page 2

I am interested to know if there are any nurses out there that are dealing with multiple sclerosis. I was recently diagnosed, and have had to make some life style changes to deal with it. I'm wondering if anyone can give me... Read More

  1. 1
    ruffhouser,

    No need to be sorry for laughing about the ASSumptions made by the doc regarding my "assumed" depression. I laugh about it myself.

    Over the past couple of years I've been the subject of many such ASSumptions. Most of them from people who really should know better.

    You'll love this one. I needed another round of IV steroids a month after hospital discharge and my doctor and I decided that they could be done at home. I had given them hundreds of times and he just wanted someone to come in and start the IV for me and then I would be hanging the steroids myself. No problem, right? Well, the home health nurse decided other wise. She explained that they do have a lot of lay people hanging their own IV meds, but she "couldn't allow a NEURO patient to be trusted with doing that." She then explained that "you may have been a nurse, but now you are just a patient and a NEURO patient at that."

    I demonstrated the procedure to her, told her about the possible side effects, the expected effects of the drugs, potential problems and interventions for them. She again explained that a NEURO patient couldn't be trusted, in her opinion, with that. She then went on to do her "complete home assessment". Now, I've been a nurse long enough to know that there are forms to be filled out and all that. I also know that there are ways of doing it without insulting and degrading people. Commenting on the fact that there are smoke detectors in our home, she asked if I knew what those were, what they sounded like and if I could find a door to get out of the house if they went off. I explained that I unfortunately found a door to let her into my home and in a minute I would be finding it again to throw her out. She followed with questions like, "do you know what that red can with the little black hoze in front of that fireplace is for? Do you know which of these faucets are for hot water? She went on and on.

    I explained the different areas of the brain and what functions they controlled. Which were for motor functions, which were for memory etc. I then pulled out my MRI results and explained that the location of the lesions in my brain did not affect thinking, reasoning or any cognitive skills. She wasn't sure that I was right, so having worked in Neurology for 12 years I pulled out several of my books on the subject and she had to admit that I was right and knew more about it than she did. After her 12 attempts to start the IV she ran 1 gram of methoprednisolone in over 20 minutes (way too fast). Made me sicker than a dog. She was off the next day. The nurse covering came in, decided that there was no need for her to be there and said if I had any problems I could call her. I never let another home health nurse in my home again. After that I had a PICC put in under flouroscopy in the hospital. Took care of it myself for about a year (had five more rounds of steroids over that time) with no infections or any problems with it clotting off.

    I have more, but once again, I've "talked" way too much.:chuckle :
    Hoozdo likes this.

    Get the hottest topics every week!

    Subscribe to our free Nursing Insights newsletter.

  2. 0
    Dear Discarded, WOW! That was a home health nurse from HELL!!! I'd kick her out so fast she wouldn't know what hit her!

    Have you been put on any of the ABC drugs for MS? My Hubby is on Avonex and that has cut way down on his relapses. He is classed as "chronic progressive" and shouldn't be on the Avonex, but beings he still has relapses, the neurologist continues to prescribe it to him. Last time he had a relapse was last October, and he got the IV Solumedrol; but we had lots of trouble with his veins-- they're big and beautiful, but fragile after so many years of on again, off again steroids. He's been diagnosed for 14 years and I can't even remember how many times he's had the IV steroids. The worst was the IV ACTH--he went on a cooking frenzy on a weekend when I was working 12 hour nights and dirtied every dish and pot and pan in the house! The floor, walls and even the ceiling had food on them by the end of the weekend! But it stopped his relapse; and we all lived through it, and he's still working (and still cooking!), so we are lucky so far.
  3. 0
    Jenny P.

    Yes, I was on betaserone for over 2 years and tried copaxone for a little while. Unfortunately the betaserone wasn't effective for me and I progressed rapidly. Couldn't really call it relapsing/remitting anymore because I forgot to do the remitting part:chuckle (just kidding) I then tried copaxone and experienced bad side effects with it. Chest pains, palpitations, respiratory depression. The doc I had at the time told me that those symptoms weren't really life threatening, just bothersome.

    The neurologist I changed to didn't agree and I went back to the betaserone for a while and then the doc decided that it wasn't doing anything for me and we stopped it. Avonex and betaserone are both interferones with the same effects so I haven't done the avonex. I read a lot of the research on these drugs.(one of the problems with getting a disease in your own specialty) While they help a lot of people, they don't always work for everyone and I wasn't one of the lucky ones.

    I have had lots of IV steroids and now have no veins left. (hence, the PICC) The steroids aren't working for me anymore either. Now they want me to try Novantrone. It's one of the chemo drugs used for guys with prostate ca. The thought is that if they use that, the nasty side effects that they find when it's used for ca patients, (frying the immune system) will/might help slow down the progression of MS. The chances of it being effective are about the same, actually slightly less than the MS ABC drugs.

    They are starting some bone marrow transplant studies for MS.
    I'm thinking about these last two things. Trying to decide if it's bad to accept that this is where I'm at and to continue to adapt to what I have left and to refrain from "grabbing at straws" and trying all the new things that are coming along. Especially when the success rates are so low. I've worked research long enough to know that the people on the research protocols are those who have failed all the conventional treatments and basically "have nothing more to loose". I'm just tired of "re-inventing" myself over and over again and trying to prove to people that I still have some worth. MY BRAIN STILL WORKS!!! my legs don't (and a few other things from about the waist down :stone Most people can't see past the wheelchair though.

    Is it "giving up" or is it "acceptance"?

    Since my employer decided that they weren't "legally required" to find another position for me and terminated me, I'll be loosing my health insurance in another 10 months or so. I'm covered on my husband's, but it doesn't provide anywhere near as much as mine did. At least I found out that the drugs weren't helping me, before I ended up loosing our home due to the cost of the ABC drugs without insurance to cover them.

    Sorry, I'm rambling again:imbar It does feel pretty good though. Thanks for listening.
  4. 0

    i have been exp. Some symptoms lately...the first symptom showed about 2 years ago, but i thought of it as "stress". After i had a car accident cause by conversion syndrome, i had an mri done. The neurologist told me there was a small white patch on the left side of my brain..but it was too soon tell what it was.

    so about 2 and a half weeks ago, i suddenly started having some symptoms..they are:

    woblly gait
    jumping (the only way i can describe it) vision. The object i am looing at doesnt "jump" but the objects in my peripherals do.
    slight memory loss
    fatigue
    slight tremors
    dropping things (toothbrush, keys, forks, ect..)

    they stopped..then started again. Any ideas as to what it could be?

    -thanks!
  5. 0
    There is a long thread on the disability section here where nurses with MS have written, check it out.
  6. 0
    Quote from natashaarian
    i have been exp. some symptoms lately...the first symptom showed about 2 years ago, but i thought of it as "stress". after i had a car accident cause by conversion syndrome, i had an mri done. the neurologist told me there was a small white patch on the left side of my brain..but it was too soon tell what it was.

    so about 2 and a half weeks ago, i suddenly started having some symptoms..they are:

    woblly gait
    jumping (the only way i can describe it) vision. the object i am looing at doesnt "jump" but the objects in my peripherals do.
    slight memory loss
    fatigue
    slight tremors
    dropping things (toothbrush, keys, forks, ect..)

    they stopped..then started again. any ideas as to what it could be?

    -thanks!
    as per terms of service we can not offer medical advice. you really need to go back to your doctor and discuss this with them.

    this is not a medical advice bulletin board

    this is a board for nurses and nurses-to-be to discuss nursing issues. please do not ask for any medical or nursing feedback related to a health situation that affects you, a family member, or someone that is not a patient under your care. this is not a free medical advice board. please be aware that allnurses.com cannot be responsible for problems resulting from reliance on medical or nursing advice received here. if you have a medical problem, please seek attention from your health care provider.


Nursing Jobs in every specialty and state. Visit today and Create Job Alerts, Manage Your Resume, and Apply for Jobs.

A Big Thank You To Our Sponsors
Top