Re: Multiple Sclerosis

Originally Posted by Residentmaid

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.

Re: Multiple Sclerosis

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

Re: Multiple Sclerosis

Originally Posted by Silverdragon102

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.

Re: Multiple Sclerosis

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

Re: Multiple Sclerosis

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

Re: Multiple Sclerosis

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.

Re: Multiple Sclerosis

Hello! I saw the Nurse pract. from the Neuro office, and she does not think it is Ms. She ordered alot of blood work and a EMG, but I think she thinks its all in my head. I do think things are getting better though. I am not as dizzy, have decreased vertigo, and no pain today. (yeah!) She said that my MRI's showed no spots (I had Mri's of brain, neck, and lumbar area~no contrast) She did not order a lumbar puncture yet, but If I want one I think she will, I will wait a bit and see if this goes away. (one can dream!)
I will keep you updated. Thanks for all your advice.

Re: Multiple Sclerosis

I am newly diagonoses with MS. Had a MRI due to visual change and numbness - 7 days later I got a call from a Family Practice MD who was covering for my PCP.....I haven't see a Neuro yet but have been told by my PCP, the covering FP and two ER MD's who looked at my MRI that MS is the cause and correct. I am almost 55 and thought I was too old to develop MS but like many of you have had symtoms off and on for years that were vague and never worked up. Other thans some slight numbness by my right eye and right leg I am doing fine. I am blown away with the diagnosis and still in shock. Wondering how this will affect me in the future, my job, my kids - well, you all know. Currently I work 12 hour shifts in a very busy ED. I work 6 shifts in 8 days and then am off for 6 shifts (all 1800 to 0630). I would appreciate any advice you all have: telling my kids, family, co-workers, administration, etc. Advice on treatment and daily living. Have so many questions!!! Thanks for letting me rant.

Re: Multiple Sclerosis

My dad has MS. The non-aggresive type. he was diagnosed about 11 or 12 yrs ago. he is 62 yrs old now. He still drives and golfs and real active. They are now in Fla on vacation and really enjoying it.

Re: Multiple Sclerosis

If you are able to manage a schedule like that even during an exacerbation of MS then you are probably going to do just fine! There are many of us who live good, active, full lives with this disease. Get yourself on one of the meds like Betaseron, Copaxone of Avonex (do some research tohelp you decide) and take it religiously. That way you will be doing all you can to minimize the chance of another exacerbation occuring. If you do have fatigue I have found relief with Adderall. I tried several other meds first but this one is the best. I have had MS since 1996 and I am still doing quite well, knock on my wooden head!! I have mild ataxia in my right leg, annoying residual issues in my right eye after a bout of optic neurtiis and fatigue. I take Copaxone every day, Adderall for my fatigue and I have slowed down a bit by becoming a Clinical Educator, no more 12 hour shifts for me!
Best wishes to you, keep your spirits up, there may be very few changes to your current lifestyle as a result of this DX.