[NurseNancy]

hi 212 and welcome to NT. of course you are welcome here. IF you have MS it can take a while and many tests to get to a dx (diagnosis).

if you have a good PCP dr maybe you can use him/her to coordinate your care and give you advice. if you have a good neuro perhaps they could do the same. and, by good i mean someone that listens to you and validates your complaints.

you might also think about getting a 2nd opinion from another neuro or an MS specialist. keep a journal of your sx's (symptoms) with dates. it may be helpful for your dr. get copies of your test results and reports and keep a file on yourself. that will be helpful for any other drs you see and will be a help for you to have your own file.

don't give up looking for answers. you are your own best advocate.
you might also call your local MS society for MD referrals. they might also have resources for you. call 1-800-FIGHT MS to get your local chapter.

good luck to you. stick around here. we're a good bunch of folks.

[junglequeen]

hello every one Im Anna aka junglequeen. I have not yet been diagnosed with MS but as a now medically retired Registered nurse I think that this is a strong possibility with my symptomology. Having trouble finding a MS specialist that I think would be able to either diagnose me or rule out MS. I am currently filing for disability under Chronic Fatigue Syndrome. I'm scared and know if I don't find the right doctor soon I will be in a wheel chair or bedbound by next year. My short term memory is shot. I only know that it is August and mostly remember that it is 2012. I'm 34 with young kids, and I can barely take care of them. I live in Alabama and really need help finding a great MS specialist.

If any one knows of one then Please tell me!!!!!! I am running out of time. I have web searched and have a few that I'm interested in seeing but I want to know more about them from a patients point of view. I don't care about bedside manner, I just want someone who is knnowiegable. I have had a few MRIs of my brain and show no plaques as of yet, but from my research that is not a definative test. The neuros I have seen so far get hung up on my medications, and I can't get through to them that I have been on the same medicine for about 2 years now and been high functioning on them. I cycle through good times and bad. In March I started getting much worse and am continuing a constant decline in functionalability. My Primary is trying but the MRIs are neg. so he won't diagnose me with MS although my symptoms fit.

I am discouraged, I feel like I am a burden on my family even though my husband reassures me i am not. I have so much pain that I struggle with everyday. I joined this site to have others who understand what I am going through and hopefully find someone who knows of a doctor who may help me.

[Kitty]

Hi Anna and welcome to NeuroTalk!

[NurseNancy]

hi anna and welcome,

i'm sorry you're going thru so much but you have found the right place for support and understanding. i'm a retired (MS) RN; 35 yrs NICU. i had to quit in '05 because i wasn't physically strong enuf or mentally equipped to do the job so i understand where you're coming from.

try calling 1-800-FIGHT MS. they will give you info to your local MS society in your area. from there they can give you MD referrals. as an RN try networking with anyone you can and see if you turn up any names. i don't know when your last mri was but if it's been some time and you're in a flare, provided you do have MS, then maybe another mri will show active disease.

MS can mimic other illnesses and the dx (diagnosis) can be a process of elimination.

hope this helps a bit. don't give up. please let us know how you are.

[BAnna]

Hi, I am a critical care nurse, dx 2011 with RRMS. It was suggested in 1995, but then I also had a (self)diagnosis of chronic, severe denial, so I just kind of ignored it.

So, I have reached acceptance. I am dedicated to the scientific approach of disease management with evidenced-based outcomes (not profit based) and examining conflicts of interests.

I look forward to learning from all of you. Thank you.

[SallyC]

Welcome home BAnna, it's so nice to meet you and have you join our group. Pull up a swing on the porch and stay tuned.

[Erika]

Hello BAnna,

As SallyC has so wonderfully said, welcome to our porch...and to the interior of our collective home of support and information as well.

I share your appreciation for the "scientific approach of disease management with evidenced-based outcomes (not profit based) and examining conflicts of interests", as I feel that these things will bring us all closer to prevention, effective and reliable treatments and sooner rather than later to a cure.

Right there beside you, enjoying swingin' on the porch for now though.

With love, Erika

[GreenFlower]

Hello everyone! I am new on here. I was diagnosed with MS in Feb 2012, when my son was 4 months old. It was a quick diagnosis, because my first episode was the great Optic Neuritis. It was shocking at 10:30 pm in the ER, but really, I have to be optimistic about that part because I know some others go years trying to figure out what is wrong with them. However my MS came on strong and after 2 steroid treatment within 6 weeks, my Neuro recommended the trial with Rebif vs. OCR (double blind study). I have had great results with that so far, but I do not think that I am getting Rebif, but I am not 100% sure. Well that is my summary so far and hope to share experiences with everyone!

[Erika]

Hello GreenFlower,

Welcome to NT.
I'm so sorry to hear that you (might) have embarked upon the journey of MS.

Many people who have been diagnosed with MS, who have presented with Optic Neuritis, are being rechecked for Neuromyelitis Optica (NMO). It is a blood test and the treatment for that condition is different than for MS. You might want to ask your neurologist about getting screened for it as it may change your treatment protocol to one that is even more effective.

With love, Erika

[SallyC]

Welcome GreenFlower