Hi Josh! HI Susan! Hi Fuzzy!

Gosh I guess I missed the last few that slipped in the door. Welcome to the club house. Pull up a chair and read a bit, or ask a ton of questions.

Hi I'm new! Drug reccommendations
 

Hi Dixieglfla,

Wishing you a warm welcome.

It might be best to try to get in with an MS specialist even if you have to travel a bit; so you have a more continuous case manager. The emergency room is not a very good way to go for long term solutions or care plans because continuity suffers greatly. It is also tiring to re-explain everything every time that you see an MD in there.
It really sounds like you need to speak with someone who can go over your options especially since you've already had some experience with medication.

Wishing you a speedy and lasting remission.

With love, Erika

Welcome Dixie, nice to meet you.:)

Sorry for your new exacerbation. Were you pretty much in remission for that 15 years? I started out with a 17 year remission, after diagnosis. No meds back then....

Come on in and join us..:hug:

hi fuzzy,

when i got sick of the level of pain i was suffering with, without any help from my neuro, i looked up a local rehab hosp in my area. i walked in and asked if they had any pain drs and got a name. i asked my neuro to give me a referral.

that dr did more for me than anyone had. you might try that.
i also remember reading something about some kind of pain syndrome that comes about when you've had accidents etc. i can't remember the name but maybe someone will.

welcome to NT.

hi dixie,

i don't know where merritt is. i live in st. augustine. do you have a mayo clinic in your area. i know around me you can apply to be seen by them.

meds are such a personal choice. i personally believe in them.

welcome to NT. hope to hear more about you.

Thank you!
 

Sally, yes I've had little flares occasionally but this is the BIG ONE that I've had.

After 3 days of high doses of salumedrol IV I feel like I'd be better off with Prednisone, I am better now bbut the constant "crickets" in my ears and my head feeling like I'm on an airplane along with my side being numb is driving me nuts. I miss riding my motorcycle.......I can't even sit on it and keep it balanced much less enjoy my convertible, lol.

Since this screen doesn't let you see the replies, whoever lives in St.Augustine, Merritt Island is about an hour and a half south of you on the Space Coast.....they launch the rockets in my backyard! My in-laws live in Jax so when we go that way we shop in St.Augustine and usually hit Friends Cafe in Flagler Beach. My daughter is considering Flagler College also!

Welcome Dixie! I am sorry you are not feeling great. Did you know Avonex changed their needle? They are now small, and have an auto injector! Thats so great! a couple of different pills are out, and we expect a new on from Biogen to be announced this fall. It used to be used to treat psoriasis in Germany.

I have a local neuro and a far away MS clinic. I go to the MS clinic for once a year and if I have hiccups during the year or little things I see the local neuro.

I hope you feel better soon.

Hi, I'm new here. I'm 35. Been having symptoms for years. Just recently went to the doctor because only recently did my symptoms start to scare rather than annoy me. I have a feeling I'm about to start living in the doctor world. No diagnosis yet. Went to the family doctor. She ordered a ton of blood work, EKG and an echocardiogram. Evidently, I have a heart valve thing that she found already, but that's not all. Referrals to Neuro and GI are pending. I've been getting migraines since I was 12 and have a family history of MS, Lupus and Rheumatoid Arthritis, so we'll see what all it turns out be. I've been called back in to "discuss" my bloodwork results and echo results on Wednesday. Can't say I'm looking forward to that. And as I'm sitting here typing, my right arm is going numb. Yay. I'm scared, bottom line, of whatever this is. I do get some comfort from reading ya'lls posts, so thank you.

Hi lawbird! I am so sorry you are not feeling your best, but it sounds like you are doing the right thing by having all specialists take a peek while they have you up on the lift. Hang around, loads to read about. :hug:

Yes lawbird. Best to have things checked out. Please keep us posted.
With love, Erika

Welcome to our world Lawbird. I understand your fear. Let's hope wednesday brings some answers for you and a name for your illness, so you can start attacking it with a little medicine and prayer.

Glad you enjoy our posts. Stay with us and be well.:hug:

New/Old Member
 

Hi all. I am a new/old member of NT. It's been a long while since I visited the boards, and I began having an urge to come back.

My name is Mair (Maryann), I was diagnosed with MS in my late 30s, and I have a wonderful service dog named Monty (Montana), hence my new username.

I used to be on the Welcome Committee and I would eventually like to get back on it.

Mair

Welcome back Mair and glad you brought your Monty back with you.:) I've missed you. How are you doing and DH?:hug::hug:

hi lawbird and welcome to NT,

i'm glad you're drs are actively searching for answers for you.
hope to hear more about you.

hi mair,

what a beautiful dog. how do you use him? what does he help you with?
was it hard to get him?

glad you came back to NT. looking forward to your posts.

Update of No News
 

Went to the doctor on Wednesday. Nothing abnormal on the bloodwork they took except vitamin D deficiency. I already knew I had the D deficiency. I take 1000 vitamin D already, now take 2000. They didn't run the ANA on the first round, so they ordered more blood work including the ANA this time. MRI, neuro consult, and GI consult still pending. GI on Monday. My symptoms seem to have receded again for the time being and I'm grateful for that, but a little concerned that will make it harder to figure out what is wrong.

Hi Mair! we missed you!

Dont worry Law, its a long haul for most of us to get a diagnosis. Hang in there. :hug:

New one here. Joining in for my dear wife. Just got back yesterday from appt for mri results stemming from memory problems for her in the past 3-5 years. Being referred to neuroligist by him as he said it is possible MS due to lesions showing on her mri but he is not the expert.

Bob

Welcome to you Bob and your Dear Wife.:)
It's always a pleasure to meet and support a caregiving loving Husband.:cool:

Please stay with us and let us know how it goes with the Neurologist. We are here for you.:hug:

Hi there,

I am new to this board. I am still living in a state of disbelif about all of this. after reading all the threads regarding everyone's symtoms and the problems they have had, I feel now that I'm not "crazy" after all. I've had /am having roughly 90% of the MS symtoms for the past 16 years. I am 52 years old.

The back/neck pain, electical sensations, tingling, numbness, bright light & heat sensitivity, pain and numbness in foot, shooting pain and tingling in arms and just recently, numbness in my cheek, lip and eye twitches, dizzyness, nausea, constant buzzing in ears, Confusion, inability to concentrate & communicate effectivly, sometimes my words come out garbled and I don't even realize what I'm saying until I hear myself.

This started for me in all actuallity during the holidays in 2011. I was hospitalized for a stroke (TIA) MRI's were done to confirm this. Several months passed and I started feeling sick again. No one was around that was sick. I started feeling dizzy, confused, In a constant state of brain fog and my left arm went numb to the point that I couldn't touch my thumb to my forefinger. When I tried I felt like there was a disconnection. My cheek and lip went numb and started tingling again. Soooo. I thought I had another stroke.

I was already on Blood thinners, I immediately quite smoking (cold turkey) and brushed this episode off. I started feeling better and that was the end of it.

3 weeks ago, I put in an application for employment with a trucking company only to find that I am no longer medically certifiable, (neurologist) so.. After questioning me about how I was doing, I told him what was going on, numbness, tingling etc, shaking inside, twitches, leg cramps, foot pain etc. All experienced in a come & go matter. Needless to say, he sent me for another MRI of the brain and requested that I get a transesophageal echocardiogram. This proceedure is scheduled for this monday. Anyway, Several days ago I called in for the MRI results only to be told my neurologist wanted me to go in for a lumbar puncture (scheduled for 8/6) He said that I had whate matter on the brain and that I should be tested for MS.

Here is what the MRI results say...

--------
There are scattered foci of abnormal white matter signal in both hemispheres. The significance of these is uncertain. In this age group, they could be due to small vessel ischemia but other entities are also possible. There is no evidence of an AV malformation. No intra axial or extra axial mass could be identified. IMPRESSION: 1. SCATTERED WHITE MATTER SIGNAL CHANGES WHICH ARE NONSPECIFIC BUT COULD BE DUE TO SMALL VESSEL ISCHEMIA. CLINICAL CORRELATION IS ADVISED.

Anyway, Any imput regarding this mri would be helpful, as I just dont understand this.

I'm hoping all goes well. If it turns out that I do have MS, I'll be relieved to know that this isn't just in my head, and maybe people will look differently upon me by knowing there is a medical reason for these symtoms and that I'm not just some lazy person who wants to sit home and rest. (yes I'm fatiqued too :-)

Sorry for writing this book

Hi Cheryl and welcome to NeuroTalk.:):hug:

It looks like the Radiologist reading your MRI is not sure but thinks it's TIAs. MS is not mentioned or demylination. Further testing is warrented and I suppose that's why your Doc had ordered a LP for you.

Good luck with your tests and please let us know your results. We'll be right here.:)

Thanks for your reply SallyC. Thats kinda what I though when I read the results, there was no mention of demylination anywhere. The nurse is the one that said the white matter could be demylination and that he wanted to test for MS as well as infection.. So... Guess I'm stuck in "not knowing" land!

New/returning MS member
 

Hi everyone! I last visited this on-line group in 2010, but have not been back due to life circumstances (major move from one state to another). I am having a really hard time now. I have had MS since 1989 and the progression has made life really hard. I am finally coming to terms with the fact that I no longer have RRMS and the survival tools that worked then do not work now. I am getting over an upper respiratory virus that knocked me on my back for going on 10 days now. When I had a fever in the beginning I experienced temporary worsening of my symptoms and could not walk or use my right hand. That has since subsided but I am so tired now and spend a lot of time in bed. Not sure how to crawl out of this emotional black hole. My kids are at camp and my husband is back at work after a bout of double pneumonia. I had a preview of us as old retired folks and it was NOT pleasant. My support network is non-existent since we moved back to CT last year. Help! How have others coped when life turns really dark?

Welcome back Caromom. Sorry for the reason for your return, but glad you are home. Come on in and join the party.:hug:

To answer your question....Prozac & LDN are what keep me going, in my SPMS old age..:D Since there is no cure, along with some Methyl B12, Fish oil and D3, it's the best I can do, at the moment.:)

Surviving MS
 

Hi. My name is Lu and I was finally diagnosed about 8 months ago. The neurologist felt my case was mild and wanted to observe for awhile. I think he was hoping I would not have to be put on anything. A few months after diagnoses, I had a bad spell. I was put on Copaxone. Headaches have gotten much better and further apart! yea! But my hair is shedding terrible. Not sure what to do. It is getting thinner and thinner. Anyone have any words of wisdom? Please help!

hello to all that I missed. Sorry you needed to find us, but glad we were here to be found. isnt it nice when you see that others are the same? I thought I was half crazy that i could smell things burning or the grocery store freaked me out till I saw others did the same thing! Welcome to the club house. :hug:

hi cheryl and welcome to NT.
i agree with sally's assessment. wait for your LP results then make an appt with your dr to discuss all these test results.

your dr sounds like he's open and listening to your concerns/sx's.
please keep in touch with us and let us know how you're doing.

hi caromom,

i'm really sorry you're having such a tough time.
infections, especially with MS, can really knock you for a loop.
please try to be gentle with yourself and give yourself permission to rest as much as you need to.

if you're not getting any better i'd see your dr again.

try not to look into the future much. we have no control over that anyway.
take 1 day at a time and plan for that. keep hydrated and eat what you can to keep your strength up.

it sounds like both you and your dh have been thru a lot and can lean on each other, and us, to get thru this.

please keep us posted.

Intro
 

Hi I am Sharon:)

I am currently undiagnosed as MS, therefore Im not sure if Im welcome here. I am looking for help. For I have many of the Symptoms. I was very sick 2 years, ago bad infection, and severe pneumonia. I am in my late40s. however have had many problems overall with my back and had multiple back surgeries and I have metal in my back, (No MRI can be performed) My SED rate has been on the rise in the last 10 years each year higher than the previous, I have some nerve damage and have chronic pain. Lyrica has saved me from excruciating pain in my leg where the nerve damage is, so overall up until 2 years ago which is unrelated to pain or anything else, I just developed a terrible paroid gland infection and one of the worse cases of pneumonia that the doctors themselves told me later did not expect me to make. They were new doctors becuse my personal doctors did not use this Hospital since I live 1 hour 15 away from the. Initially they thought the SED rate was from the infection, but I told them NO that overall I have had a High SED rate which keeps climbing over the years. 10 years ago it was 65, currently it is 103. I have regular pain that has nothing to do with my chronic back pain. Aching, suffering, unable to function until I have medicine in me each day. I never know what each day will bring. I have been tested for any and everything other than MS. During the time was ill in 2010 it was discovered I had 2 measurable nodules in my one lung and a possible granulous??9not sure on spelling. The pulmonoligist said they were not cancer he could tell and even to get a biopsy it would be impossible to get to them but wanted to follow up with CTs every 3 mos then every 6mos still. They also discovered and Andrenal Gland tumor and kind of are like ??? up in the air as to what to do about that. My infectious disease spec. wanted and wants a PET Scan ordered but the Pulmonolist has to order it and he wont. My eyes (I never wore glasses) have gone from perfect to needing reading glasses, no biggie right?? thats the norm with getting older, but the difference is in one day I can go from using 1.5, strength. to 4.00 and not needing any all in the same day, and can read print as small as bible print and then on others days/weeks I cannot. My eyes need eye drops about 10 times a day. I have numbness in my feet and leg everyday. Sometimes I can step on small piece of glass and not know it until I see blood all over. This has not been a one time thing it has occurred several times. I cannot overdo it or I pay a heavy price for it and am not functional. I am at my wits end as far as a diagnosis and I know the High SED rate of 103 is not good. I have kind of become lost in the shuffle and I know this forum is not for diagnosis but u may be able to give me non-professorial advice if possible. Im so disgusted and dont know what to do. I was never sick or in the hospital my entire life up until 2 years ago when i was in 4 times.....lots more but that is the highlights, does anyone have any thoughts for me, it would be greatly appreciated..................thank you

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.

A MS Specialist in Alabama or surrounding states?
 

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.

Hi Anna and welcome to NeuroTalk! :)

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.

Hi
 

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.

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.:D :hug:

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

New girl
 

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!

Hello GreenFlower,

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

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

Welcome GreenFlower:):hug: