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

[RN1263]

Hi everyone, I haven't posted here in awhile. I've had MS since 1991 and have had many struggles but went to school in 2004 for registered nurse and have been licensed for 1 1/2 yrs.

-What I've learned is that fast paced, hectic nursing isn't for me and WILL make me sick it's just a matter of time. Therefore, those arenas are for others who can handle such environments. I do home health nursing- It's my pace and I have one pt. at a time. Not saying you don't have any hectic days, but not like floor nursing. Your worst day in home care is still better than your best day of floor nursing!

-Stay in tune to your body and mind and how you're feeling. If what your doing is too much on a daily basis and sucking the life out of you, then it's time to rethink your area of nursing, not give it up just change arenas......that is my best advice honestly. I had to change several times to learn my lesson and my limits- so I'm trying to help someone else out there who thinks that if they can't do floor nursing then their out of the game....nope, just find a different arena for your skills.

[Jules A, MSN]

and that the doctor I see will not make me get a spinal tap!!! (wishful thinking i know)

Hi,

I don't know your particular situation but a spinal tap is often not necessary to get a diagnosis of MS. I know you are overwhelmed right now but please do your own research also. Hang in there.

[tiak41]

Hi all, I just wanted to tell you all a few things about my situation and see what you thought. 1st of all, my memory short and long term has gotten ridiculosis, I can't remember things with my children in them or sometimes I get lost/confused and can't remember where Im going and had my L3l4 back surgery august 2007 and i just had my C3-C6 disks replaced in a cervical fusion last week, i have been having pain in both of my hips, back, knees, back upper and lower and i actually had the balls of my feet hurt so bad when I got up in the morning, you would have thought I ran a marathon when I was inactive. I also was dropping things with my right hand and had numbness/tingling from my right shoulder all the way to the tips of my fingers but since I had my fusion, my arm feels better and I dont have the numbness/tingling in my arm...but my dr said she is going to see about getting me a brain mri or refer me to see a specialist about having my pain maybe its the chronic fatique syndrome? I have 5 kids and am 37...i havent been working for almost 3 months because of how bad i feel...people just look at me like Im crazy... what do you all think? thank you for your time.

[Jules A, MSN]

Hi all, I just wanted to tell you all a few things about my situation and see what you thought. 1st of all, my memory short and long term has gotten ridiculosis, I can't remember things with my children in them or sometimes I get lost/confused and can't remember where Im going and had my L3l4 back surgery august 2007 and i just had my C3-C6 disks replaced in a cervical fusion last week, i have been having pain in both of my hips, back, knees, back upper and lower and i actually had the balls of my feet hurt so bad when I got up in the morning, you would have thought I ran a marathon when I was inactive. I also was dropping things with my right hand and had numbness/tingling from my right shoulder all the way to the tips of my fingers but since I had my fusion, my arm feels better and I dont have the numbness/tingling in my arm...but my dr said she is going to see about getting me a brain mri or refer me to see a specialist about having my pain maybe its the chronic fatique syndrome? I have 5 kids and am 37...i havent been working for almost 3 months because of how bad i feel...people just look at me like Im crazy... what do you all think? thank you for your time.

Hi,

I'm so sorry you are having all these problems but it could be anything and of course we can't offer a diagnosis. :wink2: Let us know what your MRI shows and hang in there.

[RN1263]

Hi all, I just wanted to tell you all a few things about my situation and see what you thought. 1st of all, my memory short and long term has gotten ridiculosis, I can't remember things with my children in them or sometimes I get lost/confused and can't remember where Im going and had my L3l4 back surgery august 2007 and i just had my C3-C6 disks replaced in a cervical fusion last week, i have been having pain in both of my hips, back, knees, back upper and lower and i actually had the balls of my feet hurt so bad when I got up in the morning, you would have thought I ran a marathon when I was inactive. I also was dropping things with my right hand and had numbness/tingling from my right shoulder all the way to the tips of my fingers but since I had my fusion, my arm feels better and I dont have the numbness/tingling in my arm...but my dr said she is going to see about getting me a brain mri or refer me to see a specialist about having my pain maybe its the chronic fatique syndrome? I have 5 kids and am 37...i havent been working for almost 3 months because of how bad i feel...people just look at me like Im crazy... what do you all think? thank you for your time.

You need that MRI and a good neurologist. Even when I had demyelination/lesions on MRI, symptoms and a positive spinal tap my neuro STILL tried to rule out all other possibilities and had me see another MS neuro specialist for a second opinion before stating YES you for sure have MS.

[Residentmaid, MSN]

Hello, I am still in Limbo here. I tried to start PT today, but they can't do anything until we know what this is. I have a neuro appt next monday now. But I have been having the worst pain. Especially at night. My legs and arms burn and ache so bad. My legs feel like they are frost bitten, even when the rest of me is hot. Is it normal to have symptoms increase throughout the day. I start every morning off thinking maybe today will be okay, and they the burning starts creeping up my legs. they up my arms. Tloday my left eye hurts, full of pressure. and it is a bit fuzzy.(not as clear in left as right) It is so subtle at this point that it makes me wonder if it is a figment of my imaginatin. Also I seem to have double vision, like my eyes are two seperate entities. The Pt guy says I should use a cane. but that will bring on more questions. Which will bring on more expert opinions about what is going on. ( I apparently have either a severe sinus infection, diabetes, fibro malgia or Chronic fatique syndrome.)I just don't want to explain this to everyone, especially when I don't know what it is. They did do a MRi of the brain without contrast, and didn't find any plaques. While I am very glad about that. I still have all of theser horrable symptmes. (ONe of which is the inability to type. or typing different words that I am thinking) This came on all over a few weeks, is this normal. or does MS come on slowly?

Thanks again for all of your advice.

Sharon

[puggy232]

Hello, I am still in Limbo here. I tried to start PT today, but they can't do anything until we know what this is. I have a neuro appt next monday now. But I have been having the worst pain. Especially at night. My legs and arms burn and ache so bad. My legs feel like they are frost bitten, even when the rest of me is hot. Is it normal to have symptoms increase throughout the day. I start every morning off thinking maybe today will be okay, and they the burning starts creeping up my legs. they up my arms. Tloday my left eye hurts, full of pressure. and it is a bit fuzzy.(not as clear in left as right) It is so subtle at this point that it makes me wonder if it is a figment of my imaginatin. Also I seem to have double vision, like my eyes are two seperate entities. The Pt guy says I should use a cane. but that will bring on more questions. Which will bring on more expert opinions about what is going on. ( I apparently have either a severe sinus infection, diabetes, fibro malgia or Chronic fatique syndrome.)I just don't want to explain this to everyone, especially when I don't know what it is. They did do a MRi of the brain without contrast, and didn't find any plaques. While I am very glad about that. I still have all of theser horrable symptmes. (ONe of which is the inability to type. or typing different words that I am thinking) This came on all over a few weeks, is this normal. or does MS come on slowly?

Thanks again for all of your advice.

Sharon

What you are describing with your vision sounds very much like optic neuritist-you need to call your PCP and let him/her know and get a referral to a neuro opthalamologist(sp). ON was my first sx, my eye doctor told me that lesions can be too small on the optic nerve even for an MRI-he is very good well respected at Washington University-I would insist on having another MRI with contrast too brain and spine, get a referral to a neurologist if you have to, the other sx your describing sound cognitive which can come and go-the typing and thinking you described. I hope I'm wrong because this disease sucks-wish you well keep us posted.

[Silverdragon102, BSN]

Can I remind members not to offer opinions on what could be classed as diagnoses as per terms of service we can not offer any medical advice

[puggy232]

Can I remind members not to offer opinions on what could be classed as diagnoses as per terms of service we can not offer any medical advice

It is not my intention to dx- MS affects everyone differently. My intent is only to convey my experience as many in the medical community have little or no understanding of the disease ie doctots-and when going through such an experience and random sx being dismissed you start to feel as if you are going nuts, and in the mean time time is being wasted when you could be on meds if you choose to be. My doctor kept asking me for months if I had loss of bladder function no I didn't but DUH not everybody does-in the mean time I thought I was going crazy forgetting things, stumbling over my own feet, feel hot all time. I am not diagnosing just trying to save someone the agony I went though.

[Silverdragon102, BSN]

explaining your experiences is fine but your first sentence what you are describing with your vision sounds very much like optic neuritist could be interpreted as diagnosing even though the next bit stated you need to call your pcp and let him/her know and get a referral to a neuro opthalamologist(sp) please be careful on how you word something

[Dayray, RN]

Wow, I've been looking over the net the last few weeks and thought maybe All nurses would have something. well they do lol.

I've been diagnoses with MS but ill see the MS specialist next week to begin treatment and I'm sure he will have allot of fun stuff to confirm for himself that it is in fact MS. I'm gunna tell my stories because I am bored, have nothing else to do and well I want to.

I'm an L&D nurse for about 7 years I've had symptoms, eye problems, numbness, weakness, fatigue, depression , pain etc etc.. I wrote them off as stress, age all normal stuff. in hindsight I can see that it wasn't normal and I think I really knew at the time but anyway.

almost a month ago I was having a drink and thought "wow I am dizzy those 2 beers must have been really strong" I went to bed. when I woke up i still felt a little dizzy so i took my kids to school and went to bed. when i woke up I was violently ill. I couldn't lift my head without the room spinning. My wife took care of me but i was kinda out of it and anytime I lifted my head i threw up over and over. after about 2 days of that she took me to the family doctor who gave me a shot of phengran. The doctor said it was stomach flu and dehydration. I was pretty sure she was wrong but I just sleep for like 26 hours. I woke the next day pretty much normal went to work and only noticed a little dizziness. I just tried to hydrate and by the middle of the week figured i must have gotten really dehydrated because vertigo isn't normal for me nor is throwing up.

The next Monday, it was about 8 am and I felt that feeling again. I was dizzy so i went to bed and woke up sick again throwing up, room spinning and I couldn't walk strait. I would get up and fall right back down. So i crawled around my house puking in a trash can. I don't think my wife really knew what to do. I'm told it was a few days later but I am not sure. she sent me to the family doctor again. my daughter drove me and i was able to walk out of the car but I swayed and struggled to keep from falling. I saw someone else they thought i had maniers and that seemed likely to me . they made a referral to the ENT and I waited for my appointment. In the mean time I used the phenegran but told myself i needed to get control over the nausea and was able to. i was also able to teach myself to walk and only fall a little. after a few days I could drive and i felt that i was safe for other people on the road. the whole time i was dizzy and things would spin

finally 2 weeks after it all started i saw the ENT. he tested my hearing and although he was a little put off by the whole dizziness thing he and his assistant did some maneuvers aimed at fixing postural vertigo. he said i had postural vertigo. I knew that I didn't and that it was more serious. he was very nice and said that if things didn't improve to see him in 4 days and he would test for maniers. I knew it wasn't maniers by then because my ears were fine and i didn't have any of the other symptoms.

Things didn't improve by the 3rd day (now 2 and a half weeks form the start) so I decided i had to go to the emergency room. Now as nurses I am sure you realize the gravity of that, I mean ERs are for people who are really sick , who are gunna die or cant take care of themselves but I was at the end of my rope. It was the only place I could think of where i would find an MRI and people who had to be responsible for me. The ER doc was nice but annoyed by me I never tell anyone I am a nurse but I could tell he thought i was crazy for being there. He ordered an MRI and they found 10 lesions on the brain as well as one on the spinal cord. The Nero was not an MS specialist and the hospitalist seemed a bit put off by his haste in diagnosising MS but I am pretty sure he was right or at least close.

I got 2 doses of steroids in the hospital and 3 more at home. I am suposed to see the MS specialist next week.

What bothers me more is the gait issue. I can walk almost normaly and a person watching wouldnt know. if you saw me stumble you might think i was drunk or just weird but my legs are very week and I have a weird falling senstaion and when I close my eyes I dont really knoe where i am in space. I still have waves of nusea but just burp them down and they pass. i could walk the halls but wonder about doing it all day and if seomene turns out the lights or grabs me (which is not unheard of in L&D) i can't promise i wouldn't fall. I think i could do the physical parts of my job moving, lifting, supporting but it seems so risky.

so does anyone have anything like this? I know i can compensate for the vertigo but will I ever not have to be so conscious of where i am and how I am moving? does the strength in the legs return?

i ask every doctor and therapist i see, they all seem really happy with my ability to move around but no one will really answer the questions of long term progress. I assume its a mixture of them not knowing for sure and knowing that it wont ever be the same but i just don't know.

For the long term MS seems manageable, it sucks but there are worse things. still the ataxia is really freqing me out. I am 34 years old and before this happened i was in pretty good shape. physically i still seem normal I just wonder what this mean for me.

i want to go back to work but If i ever hurt anyone ..well I couldn't

[Jules A, MSN]

Hi Dayray,

I hope the MS specialist is helpful for you. The great thing about nursing is the flexibility so if you aren't able to continue on with your current job you should be able to find another position that is manageable. Many people with MS are fortunate enough to continue working. Good luck.