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

June1925,

Can you explain more about why you feel that Tysabri is better than Copaxone?

I am considering Copaxone over Tysabri because of the following concerns:

Apparently Tysabri is associated with neutralizing antibodies (proteins produced by the body that may decrease the effectiveness of therapy)

Also, it may increase fatigue/malaise

and it increases your chance of getting a rare brain infection that usually causes death or severe disability called progressive multifocal leukoencephalopathy (PML).

I don't see any of these side effects or possible consequences with Copaxone. I was on Betaseron for years and had the flu-like symptoms the whole time so I will not consider any of the other interferons (Avonex, Rebif) so I pretty much decided on Copaxone.

I look forward to your reply.

Karen

JulesA,

Just went to the neuro yesterday and we are considering Copaxone but he wants me to research the other therapies as well. I am concerned about djmart's comment about "golf-ball sized" lumps. OUCH! :o

Specializes in Family Nurse Practitioner.
JulesA,

Just went to the neuro yesterday and we are considering Copaxone but he wants me to research the other therapies as well. I am concerned about djmart's comment about "golf-ball sized" lumps. OUCH! :o

Like with any of these therapies some people get side effects and some don't so its kind of trial and error, sigh. From what I've read Shared Solutions does down play the local reactions a bit although it also seems that what bothers one person isn't a huge deal to the next person. I know of someone that quit taking it and now is on nothing because it was giving her some dents. Dents to me, while not a plus, wouldn't be a deal breaker when I think of the things progression could cause.

I think your neuro is giving you great advice about researching all the options and the good thing is that you can always switch again.

For the poster that asked about Tysabri my two cents is that if someone is progressing rapidly I would definitely head right for Ty. It has shown, imo, slight improvement over the ABCRs but for someone who is stable right now I'd be inclined to stick with one of the meds that has more long term data with regard to side effects and efficacy. Just my two cents though. ;)

Hi-

I'm not sure if this is the right way to post or not, but I will try to respond to your questions and hope for the best.

I've heard of the antibody issue, but hane had no problems as yet in that regard. My infusion nurse has remarked to me that none of her patients have experienced those problems yet either after I asked, but admittedly it's still early in the drug's uptake, so anything could still happen.

I feel sleepy after my infusion, but that seems to be gone later in the day. It certainly hasn't been an issue that affects my quality of life. I didn't do well on Copaxone- and I tried for a year. I hated the daily shots, and felt pretty crummy generally. Aditionally, my MS worsened symptomatically in the year I was on it, although my MRI was essentially unchanged.

Betaseron and Rebiff were even worse. When I took the full dose, I could barely move. It was awful.

About PML. To my knowledge, PML has only developed with Tysabri patients WHEN they have used it in conjunction with another drug (the one I'm familiar with is Avonex.) To my knowledge, there has been NO PML in monotherapy. Again, it is still early in the drug's uptake, but that's what I know.

FYI, I have also been on Novantrone, so I've sort of been around the block with MS meds. Novantrone helped my MS, but hurt my heart. Also, FYI, I am a very small shareholder in Elan, one of the companies that owns and markets Tysabri. I bought the stock because I believe in the drug( not the other way around,) but I thought I should mention that in the spirit of full disclosure.

For me this drug has been a godsend. I'll stay on it for as long as I can and not look back.

Hope this helps.

June1925

Specializes in Family Nurse Practitioner.

June1925,

May you continue to do well on Tysabri. FWIW I haven't heard about anyone developing antibodies on it yet either.

Specializes in Emergency Nursing, Cardiology.

I was diagnosed with MS Sept. 30, 2007. I was a new nurse and in orientation in a cardiac unit. It began as I was studying for my critical care pharmacology competency. The letters on the page looked washed out, as if there the printer the page was printed on was running out of ink. I went to work the next day and couldn't read the numbers on an insulin syringe. Needless to say, I told my charge nurse what was happening and she reassigned my patients. I went to my eye doctor, who couldn't find anything wrong with my eye. He suggestd I go to the ER. Of course, after just having gone through nursing school, all the worse case scenerios were going through my mind...brain tumor...cancer.. I was even more freaked out because I was already blind in my other eye from a child hood accident.

Anyway, after an MRI and and an LP I was diagnosed with MS. I felt as if my world had been turned upside down. I went through all of stages of grief, denial and anger then bargaining (it can't be true, I just finished nursing school in top 5 % of my class...I save lives... I run 12 miles a week... I eat healthy food...). Then depression, while recovering at home from optic neuritis and taking steroids, and finally and reluctantly, acceptance.

Looking back I've probably had MS for at least 10 years (I'm 39 now). I just attributed vague tingling and intermittent pain to injuries, vertigo and fatigue to being a mom of three young kids.

When I was first diagnosed my neurologist said I had a choice as to how I could handle the disease I could do nothing (as many people choose to do for financial reasons or because they can't stand to take injections) or I could fight. He explained a little about the fight (expensive injections, side effects, etc.)

For me it wasn't a question. I'll take a fight any day, this was nothing new to me. I fought to get into nursing school, I fight for my patients every day. I went on Rebif and experienced the flu-like side effects and Raynauds in my fingers. Then after three months my neurologist checked my liver enzymes and they were 10 times normal. We tried reducing the dosage and they kept climbing. I went off Rebif and began taking Copaxone. No side effects at all. I've been taking it for 8 months and I've had no exacerbations. Also, no return of Raynauds.

Yes, I get the little lumps at the injection sites but the way I look at it, that is just evidence of the fight. Every time I give myself an injection I know I am doing something to help myself. I will fight this disease and I will continue to work as long as possible.

I loved reading all of your posts. I felt so alone with the diagnosis, like I was the only one. My family was supportive but I had no fellow nurses who were surviving with MS to look to for hope, and to say, "If she can do it, I can do it". I explored internet resourses like the National MS society and other organizations and that helped, but reading about other nurses who are surviving and working despite their challenges is inspiring.

Specializes in IM/Critical Care/Cardiology.

Hi Brian,

I don't have MS but certainly am intrigued by the positive attitudes from all of the posters. It's gota be rough. My point I'd like to make that profoundly hit me was.."don't slam the door in your face". How true this is, and thank you for reminding me of this and sharing your story.

Well, my latest MRI showed new lesions and areas of inflammation. According to the neurologist it also showed brain atrophy :o That was depressing to hear.

Anyway, I am starting on Copaxone (have used Betaseron before). I am an RN so I do not need instructions on how to give myself SQ injections and they gave me a sample pack of 14 syringes. So, today I gave myself my first shot in the abdomen which is where I always gave myself the betaseron. No problem with the injection itself but the med stung like a son of a B and that pain lasted for alt least 10 minutes. It started easing up after that but I could still feel it for quite a while longer. Is this typical? I am not sure I can deal with this on a daily basis!

Tomorrow I guess I will try another spot but I sure hope it doesn't hurt like that again.

Any suggestions from anyone?

Karen in FL

Specializes in Travel Nursing, ICU, tele, etc.

Hi all,

Thank goodness for allnurses and that this thread exists.

I just found out on Friday that I have "multiple" T2 hyperintensities in an MRI I had because of Migraine headaches I was getting. Now doing research, MS makes so much sense in explaining the symptoms I have been having for the past few years. I actually had to insist that my neurologist rule-out or rule-in MS, so I will have a spinal MRI with contrast next week, but won't be able to meet with him until next month to discuss it. It is frustrating to have to be so assertive with a Doctor...I don't WANT to have MS, but if I do have it, I want to start treatment sooner rather than later.

Did anyone else have difficulty establishing a diagnosis? Do you think I should find a different Neurologist or do you think it takes a relatively long time to diagnosis MS?

It makes a lot of sense to me, do you think I am reaching for something that might not be true in order to explain symptoms that I can't explain? (fatigue, dizziness, syncope, NO heat tolerance, diaphoresis, numbness in my right thumb and hand, vision disturbances, I can sleep for days and not feel rested....).

I don't want you to diagnose me, but I am feeling a little overwhelmed. I do have a feeling that I could actually sway this thing one way or another by how I report it. At this point, I don't think my current neurologist thinks I have MS, but is doing the follow-up because I want it. I am trying to be as honest as possible but don't know if he is listening to me....

God!!! makes me want to screeeeeeaaaaammmm!! For crying out loud, I am a nurse, can he just listen to me for 5 minutes without interrupting or arguing? I mean it does feel that I AM arguing for it! But I'm not, I'm arguing for the freakin TRUTH!!!

Sorry, this has become a rant, but I am overwhelmed right now and any advice you have would be appreciated. Thanks.

Specializes in IM/Critical Care/Cardiology.

Hey,

Take a deep breath. I know the stress point of "not knowing what" but knowing there is something going on. In my case, I trusted my original doc, and stayed sick and became worse after 4 months, then seeing a specialist. I was then diagnosed in 48 hours. (NOT MS).

If I had to do it all over again, I would have gotten a second opinion when I had the gut feeling something was wrong and I was symptomatic. Instead of being strung along on 40mg of Pred BID and now 6 years later being worked up for possible Cushings.

If you feel like you'd like another opinion, take the abnormal xrays and the spinal MRI and those results andsee someonwho will make time to see an hear you.

I wish you luck and hope you get an answer soon. You should not have to feel like you are in a argumentative conversation with a doctor. H/she should be listening to what you are feeling and how your sx'x are affecting you. Just my opinion.

No problem with the injection itself but the med stung like a son of a B and that pain lasted for alt least 10 minutes. It started easing up after that but I could still feel it for quite a while longer. Is this typical?

It WAS typical for me when I was on Copaxone and I'm also the one that got enormous lumps under my skin from it.

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 (needed steriods) and only have had mild symptoms from time to time since then.

I felt like adding on to this post I wrote.....

F.Y.I.- Most if not all injectibles for MS have this disclaimer-

"**** The exact correlation between MRI findings and the current or future clinical status of patients, including disability progression, is unknown."

After years of abusing my body and mind with these chemicals and obsessing on my yearly MRI's I finally decided enough was enough!

.....I now only stay on certain oral meds for symptom relief and that's it, no MRI's, no inj.....if I have a flare up worth speaking of, then I'll go on IV steriods, but I'm done with the so called "disease modifying" drugs.

Frankly, I know what the research claims, but I don't know if the drugs really do anything? They surely aren't a cure! I had more attacks when I was on them, then now that I'm off of them.

Oh, and I didn't even mention yet the god aweful depression and suicidal ideation that Betaseron caused me at a ripe old age of 24 after being on it for only 2 mos. or the eating disorder that plagued me for 5 years while on Avonex! Now that I'm off the inj.'s I don't have thoughs problems or issues at all.......coincidence??? I think not.

Actually, it was quite a liberating and freeing decision after YEARS of being on inj's and dealing w/ what they entail (side effects, lab tests, MRI's, exams, ect.).

I'm just trying to educate that not everyone wants to be or should be on these medications and it's okay!

for those of you who chose to go down that road I wish you luck

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