? misdx ms?

[pedsnurse]

is it that tough to dx MS? I have been under a neurologists care for 1yr now and we have most of my neuromuscular pain under control and the migraines, but am still having shakey tremors in upper extremeties and loss of balance or llegs just give out without warning.  I am a peds nurse and i dont know what else to do about shaking tremoring hands/arms it is tough some days to draw up meds for immunizating or IVs or labs. Somebody plz HELP!!! I look like a bad case of Parkinsons and I cant handle loosing the memory like I have been..Patients finishing my medical thoughts and words I have known all my life and suddenly they have escaped me! Is there help for me or just suck it  up and adapt to new way of life?? Have had MRIs and were inconclusive for MS but Dr didnt really rule it out either. does it not show up in early phases??

[pedsnurse]

Wow it seems as if we have alot of s/s! I really enjoy the online chats! This couldnt be an accident if it helps us! I just wish I had a name for these"issues" and "speed bumps" thats what I have, not problems! And I think you should give him a chance! He may surprise you! My boyfriend did! From the day I had to announce it at work! He stuck by me knowing cancer is usually a negative topic. Then half way thru my chemo his own father was dying of prostate/bladder cancer and I flew out to take care of him and make is time peaceful. Mike came out through out the time and stayed till the end and we both cared for his father. He has always been there for me and awaits with me to get a Dx and we just found out couple of months ago I have an inoperable brain tumor. He helps me through the tough times and we laugh at my "speedbumps and issues" Especially my trmors and word stumbling!! Even when I get frustereated and you laugh through them! So dont give up on him untill he walks away, he may not walk away but walk into your arms! I do have my cell phone next to me but when I fall  its fast. The leg pain and swelling and loss of feeling is the scariest!
I am about to face the most embarrasing thing, I have always been the giver and caregiver to others and I find myself in a strange position to have ask for leave donation at work. As a GS worker you can donate your leave to someone in need. I have to humble myself to have to ask for leave so I can have this surgery soon so I can still have money comming in while healing. I hate to ask others for help!!! Well I guess we all have to do things we dont want to. I just wish I had some energy!!!! I have so many things i need to do and wanna do but by the time the wknd arrives all i wanna do is sleep!!!!!!!!!!!!!!!!!!!! I want a vacation from my "issues" before i go crazy!
will be watching for your next email!
Stephanie

[marez]

Hi,
I go to the neuro the 24th I think ( funny I have to write things down and then remember where I put that note!) my handwriting changes too.. hum anyhow. I live in WA state the eastern side where I heard that MS is rampid. I used to do hair when I could stand and had many clients with MS, they all did well and where positive so that is what I am hanging on too the people I know I think it is better then the RA dx or the lupus one they gave me and took away.
Anyway my grown kids are in Seattle and really not helpful (love them but they are enjoying there lives)  I havent' told them a thing about any of this. I think a lot of people around me think I am a complainer I sure sound like one. So no I don't talk to anyone but my mom about this seattle too. So here alone with an 8 year old and boyfriend of 3 years will run from this if it is MS his is already a widower so it will freak him out, my migraines already do. We where just talking about mariage or living together hum that will be gone. I don't want to put him through this and mad I don't think he would do well with this. maybe this will end our realtionship or surprise the heck out of me. either way whatever I suppose.
I also take maxalt but my pain for headaches does not require pain meds it is my legs that need meds for pain.  I also take blood pressure meds as with migraines my blood pressure goes sky high when normally it is very low.
I don't have balance problems per say, but with your fears may I suggest a cell phone in each room. I have that for safety being alone. used cells your friends have still call 911, just have one in each room it's easy.
I also believe I found this site by accident yesterday I was procrastinating homework and thought just 5 min search on Ms as I have been in denial big time my friend and mom have pulled me out of that my elephant in the room is still here but better now that I found this site I don't feel so crazy or alone.
You said you where having a hyst? I had mine and really ask about getting the ribbon inserted it holds up the bladder and from what I hear if you do end up with MS or frankly just age normally when you sneeze you don't leak. I no longer get up in the middle of the night to go to the bathroom I would like 7 times a night. Also my tiredness got better after the hyst. I wonder if hormones and Ms are connected?
Congrats on being a survior that is awesome!
have a good day and feel free to email me I am really free to talk when I am not doing homework in a fog! :-)
Mary

[AMO]

hi stephanie,

Iam sorry you are having these problems , especeially without answers is tough dealing .

I read through what iIcould here (ya know that readiong retention stuffha!) I agree with Quix seeing a movement disorder specialist sounds in order for evaluation. My ms specialist sent me to his  colleage, they wowrk with PD and Ataxia. At least in the offfice I see, you would probably need a referal from another neuro. They would see your mri maybe in a different way.

Most of my illness comes frome my cerebellum, I have Cerebellar Atrophy( mostly midline but later some  hemisphere) that causes tremor, balance, speech problemsand it was my movement doctor who recognised theatrophy, NONE of the radiology reports eveer mention it.

Now,, I am so sorry you have had ovarian cancer, I do hope you are well now. I am certainly not well educated on thiese mattters, but when I read this, then about your tremor, balance and the likes,  wwhat came in my head was Paraneoplastic Syndrome. Do you know if they have tested youu for this?

Not that a person could not have caner and ms, buut these can go hand and hand.
I hope you se e a neurologist again soon.
be well, amo

[pedsnurse]

I am fairly new as well! I found this website actually by accident, or was an accident?!
I found this just this last wknd and all ready I feel so relieved that I am not the only one who's thinking they are crazy! I apologize for any typos!! this is actually the best way for me to communicate! you can't see me struggle to find words or studder!
It all started about a yr ago, I have suffered with migraines for about 15 yrs and my PCM wanted me to see a neurolgist because they obviouslly knew more than he. So we talked about my headaches and she saw me shaking and just not acting right. So she started doing some tests in the office-testing strength and gait ect., which I flunked. So I told her that I had done some research and it sounded like MS. She then sent for MRI's immediately-which really didnt show any lesions. So she has been treating the neuromuscular pain with lyrica, ultram, nortriptyline-zanaflex for tremors(which I think is what is making fall w/out warning, but not sure) I'm on maxalt and phenergan  and toradol for migraines. And that's only part of my regimen!!!!
I now am experiencing some visual changes, the loss of balance is increasing, the legs giving out is new as is dropping of things and the memory and word recall is increasingly getting worse. I am scared because I am by myself so if I fall i'm in trouble if cell isnt handy. That happened to me new yrs eve day-was walkin out to car and fell tried to get up and knee cap went behind knee. I laid out there on the cold wet ground for 45min.
I am also scared because for 24 yrs nursing is all I have done-I don't know how to do anything else(career wise) I have no living children and my family is back home in Ks and MO. Do your older children live close to you? Where do you live? I so understand the tiredness there are too many days I feel like I shoud be 80 not 40.. Stairs are not an option anymore. And I seem to be requiring more sleep these days. I really need 9+ hrs here lately. I cant keep up with the kids at work! I am usually close to bed after work! I get hom 5-6pm come home, let dog out, take hot shower for 20min, crawl into bed and watch tv or emails and am usualy out between 9-10pm and up 6am.
Please feel free to chat with me anytime! We can keep each other encouraged as we see more Drs and get disgusted by them!!!!! all those yrs of  school and they still dont know anymore than when they got into medicine!! Being a nurse makes it even more frusterating with the Drs-some of them dont treat me like a pt but as nurse a colleague and I hate that! Like I'm supposed to know??!
Well hang in there!
Stephanie

[marez]

Hey I want to hear more about the limboland party???
I already know the new doc I have to see and he is a jerk that is coming from my grandma who never said a bad thing in her life but she flat out told him he needed to smile and be nice! I am stuck with him for starters as mine passed away. I need to know how to prepare a great list for him as I hear he doesn't speak... oh limbo land huh well sounds like you all do your best to keep humor up and I am into that!
Mary
everyone is so kind to bad the outside world isn't as nice as all of you!

[jensequitur]

I've heard from a lot of people that a traumatic event set off their symptoms, or made them so much worse that they decided to get checked out.

I got a brown recluse spider bite in January 06, and it took almost seven months to heal from that.  As soon as I had recovered from that, I started having vertigo, numbness and tingling problems, then cognitive difficulties...  and in March 07 I was diagnosed with MS.

I know what you mean about symptoms getting in the way of real life!  Frustrating, isn't it!

[marez]

Hi,Today is my first day on here but you sound so much like me I had to post on another forum here this one was full. What caught my eye you and  I have the same speech thing going on it's like my brain is working but my mouth is so far behind it, studdering, also headaches my mind is gone I am using the wrong words and everyone is like what did you just say? I am like what oh what did I say? although other symts are differant my legs are like cement and painful and numbness. I had a MRI 4 years ago it was not clean but they only put a ? next to MS and said well you need 2 differant episodes. so I am going to a new doc mine passed away darn it! anyhow I too am clear for lyme, lupus was checked at one time they said it was that now they say no same to RA but the pain is awful and I don't see many that say MS has pain is that right? my eyesight is shot my 8 year is reading lables for me that is with glasses on, I am angry and frustrated I just want to know what it is and move on sick of hearing well maybe it's this or that.... I want my mind back like you! it's like cotton candy fogged it all up and I can't get out.
Also had a hyster about 4 years ago and some of my symptoms went away for a very long time. Not sure if it was a link or not.
Anyhow I hear your frustration and it makes me personally feel better I am not the only one feeling insane and frustrated.
I wish we both knew and all those others like us.
oh 45 year old mom who feels 105 and wants a shower but can't seem to drag my body there what is up with that and this awful pain??
sorry chatty scared and clearly not thinking like I used too or this would be a better post.
Best of luck everyone
M

[pedsnurse]

I am now a cancer survivior!!!! Am awaiting a surgery date!!! Have been off chemo for 6 mos. We know some of side effects are related by actually  a good portion of my issues started before cancer and Drs just didnt know what to do with them so they did nothing and now they are a nusiance to me and my career! Thanks Drs!.  So at least I am ud=nder care of neuro. I am trying to sched another appt with her as soon as I can! I dont like limboland!!!
Stephanie

[jensequitur]

It's very frightening when you don't know what's wrong with you!  Before I was diagnosed, I was sure it was a tumor or some weird disease I hadn'tt figured out yet.  In some ways, it was a relief to know it was MS.

PedsNurse, are you still dealing with the ovarian cancer?  If so, it might be a side effect of the chemo, as Quix mentioned.

[pedsnurse]

It is nice to have another peds person!!Would love to here about your peds background!
Wow where to begin. The shakes/tremors/loss of balance is really getting to me, but know after what happened to me today I think some of my probs is the Zanaflex. My reasoning--I had a lot of biopsies done  on Mon at my GYN-Oncology appt. Workd yesterday which I shoud not have done, worded this am only for 1 hr and was sent home because was doubling over  in pains, I swear it was like labor pains. So came home and took 2 of my zanaflex and after  an hour man I was so loopy, pain freee, but loopy and I was going to let my dog out and immediately fell as 1st foot hit the floor.
So I sat there for awhile and crawled to let dog out/in back to bedroom managed to in bed and went to sleep.
I need to make another trip to neuro anyway. My last MRI showed nothing but she is still not ruling it out, Last MRI was last June. I am now having difficulty with vision--see spots and difficulty focusing. My recall is so bad its madning! I type faster than my brain can keep up with, but not being able to recall things is reallly getting me down to the point of crying. I sometimes feel like I am locked up inside my self and its terrible itsw like being surrounded by glass and you cant find a way out.
I have a difficult time getting up from la=yning/sitting positions its like watching an old person. God love my friends they wait for me and help if they can. I am 40 almost 41 and I cant even function as I should. I will be having surgery the hysterectomy, so I really dont need a balance issue!!! My mother will be flying out here when we figure out when i can financially have the surgery!
Please help! I tried to do a blood draw on one of my babies and dropped the whole tray! My coworker made a new one and brought it to me and I was albe to successsfully draw her blood and start the IV. I cant work like this! I have even wondered what if they never Dx me or what it it PD or MS. I dont like limboland!!!
Well thank you for listening. Its so hard for friends and family to understand what your going thru! I stumbled across this by accident but maybe it want an accident??!!!
Stephanie

[Quixotic1]

Hi, Welcome to our forum!  I hope we can help you get info so you don't need those neuros over on the other forum.  You're my favorite kind of people, being that I was a pediatrician in my former life.  I'm not official here, but I am here to round up as much info on MS, living with it, what it is, how it's treated and how it's diagnosed.  But I, like everybody else cannot diagnose ANYTHING online.  I can, though, talk about things in the context of MS.

Although tremors are actually very common in MS, they often aren't recognized when they are the presenting symptom.  I'm surprised that with all your tremors and nerve pain that you haven't seen a neurologist yet!  By all means this is your next step.  You need a good, thorough neuro history and exam.  And perhaps a looksee by a neuro specializing in movement disorders, which is where your tremors fit.  Don't worry, I'm not necessarily thinking PD.  Movement disorders are also more common in people with MS than in the general population.

What exactly did your MRI report say, that it was considered inconclusive.  MS is a clinical diagnosis and not and MRI diagnosis, though you'd never know this listening to some of the neurologists we all have seen.  Get a copy of your report, if you haven't already and let us know exactly what it says.

My neurologist dismissed MS outright (I hadn't even considered it) when I presented at age 53 with R hip flexor weakness and R LE spasticity.  I had only one frontal lobe lesion on the brain MRI.  My spine was clear.  He said my MRI was completely normal and the lesion was just a UBO (Unidentified Bright Object - normal for age)  AND that I was too old!!!!!!!!!!!  There is no upper limit on the age at which MS can present.  So that dododoc delayed my diagnosis by 2 years.

I have read some compelling data on post-chemo problems (in breast cancer) that talk about cognitive deficits.  Have you talked to your oncologist about this or about the neuropathy being related to that process?  BTW - it really is not fair to be considering MS after going through ovarian cancer.  How are you doing?

I do agree with you about how awful it is to watch ourselves suddenly get stupid.  Actually, in MS, the deficits are a slowing of the ability to access what we want to say or want to remember.  We get there, but it takes longer.  It is maddening.  I have better recall at the keyboard than speaking, but it is likely because I'm a dreadful typist.  Word recall is the most common problem cited, but others are short term memory slowing, difficulty with multitasking, abstract reasoning, and spatial analysis.

The dropping things is a real concern.  I stopped carrying newborns back from the OR after C-Sections about a year before I was disabled with Autoimmune Inner Ear Disease and intractable vertigo (from the inner ear - not MS related) before the MS developed.  Your PCP needs to fasttrack your work up!!

Well, I hope you find a home here!  This is an incredible bunch of people here from every part of the spectrum of MS; from first suspicion, to trying to get past dismissive, arrogant doc's (no, really!!  some docs are quite arrogant, especially toward women.  Really!) to waiting as one test after another is normal or not enough to convince a doctor, to newly diagnosed, to old-timers.  We work to get good info and have a pretty good time in the process.  We also understand about going through what you are - wondering what all of this means about your future.  There's a lot of compassion and support here.

Quix, MD

[pedsnurse]

Thank you for your gracious welcome to Limboland!! humor is good! Yes like my ovariand cancer hasnt been enough and now Limbo! Its amazing how far we are'nt in medicine! Please forgive any typos when the shakes take over its hard to say what the word is! So how long have you been in limbo and what have your sx been??
All my extremities shake and tremor legs give out without warning,tired all the time, exhausted most of time. Am on Lyrica and Zanaflex the work for a while and then the sx's come back. I stutter for words and thoughts. My brain takes vacations quite freqenlty. I am falling down more and more and drop syringes or whatever is in my hands. It gets beyond frusterating most days! All I have ever known is nursing for 24 yrs this is all I know.Something has to be done soon, what if I drop a baby? Some days it really scares me, and then if you are tagged as MS that's not good either. Some days it looks like I have Parkinsons I gues I want a name adn other times glad I dont have a name. Am going to have to make an appt with neuro. soon since quite a few of sx have presented themselves and I notice my vission is changing didnt have probs before.
So how is it with you? I thought we werent suppose to fall apart until LATER in life? NOT in our 30s-40s! This is crazy!!
Stephanie

[Momzilla]

Hi, Stephnie, and welcome.  You are now officially greeted by one of the charter members of Limboland.  It's really a frustrating place to be, but the people are great, and the weekly weanie roasts we have (of incompetent, defective, dodo neurologists) is always atreat to look forward to.

I have been having symptoms much like yours without any radiologic evidence of any sort of abnormality.  Heather will tell you that she does have MS.  She has lots of info to share.  I do, too, but am still frustratingly in 'Limbo' with no real hope for diagnosis that I can see in the near future.  

MS, when it doesn't present 'classically' is VERY difficult to diagnose.  I don't really even know what 'classically' means anymore....

Hang in there, and we will walk you through what you need to do to make sure that your doc is taking you seriously (although it sounds like she does, so far), and is ordering the proper testing for you.

Please stay with us.  The weather's always great in Limboland, if not always sunny....

Momzilla*

[pedsnurse]

Hi, I forgot to ask you, do have MS and if you do could you share? I also forgot to mention the extreme fatigue!!! They have tested for Lyme(neg) and Vit B and D levels ok, however now have some serious blood disorders and am having to have medically necessary hysterectomy.
This is first time posting, I posted  under Neurology earlier today and got frusterated, Drs were posting everyone else but me. We in medicine make bad patients.
The Drs have danced around Fibromyagia its like no one really wants to comit!
Well thank you for listening and sharing!
Stephanie

[pedsnurse]

I am 40 yr old. Live in Va and am  a nurse of 24 yrs.
No lesions showed on the MRI but she was not ruling it out. She put me on muscle relaxers and neuromuscular pain meds, but the shaky tremors of arms and legs are back and my legs give out without warning things are in some ways worse now than when we started out. Some times typing can be a nightmare with tremors. My thoughts get all discombobulated and I cant remember words or phrases I have known all my life and when a patient finishes my thoughts something is not right. I am due to be rechecked in a couple of months with my neurologist. Part of me says go in early and the other part doesnt want to look like a hypochondriac that nurses hate!
I just seem to be fallilng apart and didnt think it would happen till later on in life! Some days when I can not handle daily activities I get really down. I am a nurse I take care of otheres, I cant fall apart!
Stephanie

[Heather3418]

I am glad to hear that you are under a Neuro's care.  What is he saying about your symptoms and your testing.  Do you have lesions on MRI and having relapses and remissions of symptoms?

Of course you know that some of your symptoms do sound like Parkinson's Disease, but I take it that your doctor has ruled that out.  If you don't mind me asking, in what age range are you?  30's, 40's, 50's?

A diagnosis of MS is actually putting pieces of the testing "puzzle" together.  It is marked by relapse and remissions of symptoms, positive testing on physical exam and some type of positive testing to rule IN MS and rule OUT MS mimics.  There ARE many disorders that resemble and mimcs MS.

Some that come to mind are Lyme disease, ADEM, some aspects of Fibromyalgia (although memory loss is not considered a symptom of Fibro) low Vitamin B levels, etc.

MS is difficult to diagnosis.  Did you have any lesions show up on MRI?  IF so, do you know that location of the lesions?  If you current Neuro has been seeing you for a year and still does not know what is wrong, maybe it's time to find an MS Specialist.

I haven't seen you post before and would like to welcome you to the Forum.  We hope that you will post often and learn about this disease, along with us.

Heather