hello BAnna and welcome to NT,

i'm a retired (MS) RN; 35yrs NICU.
i hope to hear more about you. this is a great forum.

hi greenflower. i'm glad you found us. we're an informative and supportive bunch of nice folks.

i got a quick dx also. i'm thankful for that.
hope to hear more about you.

Hello
 

I do not have MS. I have a mitochondrial dysfunction that shares many of the problems also associated with MS. Recently I stumbled on a treatment that has improved my condition both physically and mentally.

I found the following while investigating the benificial effects that 5 mg of benadryl every 4 to 6 hours has had on my condition (mitochondrial dysfunction).

" Drugs for treatment of multiple sclerosis and
other autoimmune diseases"

"Researchers in Dr. Lawrence Steinman's laboratory at Stanford have developed a new strategy for treating or preventing autoimmune diseases with antihistamines"

I tried to post the link to info on this, direct from the Stanford site but was not allowed. *edit*


I have been putting this info out on the web for a bit now, *edit*


David Staup

Hello David, welcome. :)

Using Antihistamines in MS is not a new theory. It dates back to the 80s when a nurse discovered that it helped with her MS symptoms. It helped some but like all meds, so far, not all.

Thank you for your input.

Be well.:hug:

Ummm... help?
 

First, my name is Dianne and I am losing hope for getting SOME kind of answers so this is my very first time on any forum or message board, etc, so please bear with me. I also am no longer able to drive, have lost my car, home, internet access, pretty much everything, so I may be semi-sporadic getting any replies because I have to be driven to the public library and my poor mother with all my medical appts has enough driving on her plate.. Oh and a job! I also, at this time, should explain that I am (ok, WAS.... til recently) a Master's level nurse and I have tried every doctor I trust and have spent hours and hours searching the internet. Soooo, if there is anyone out there that can even point me in a new direction, you will have my gratitude.

Nearly 15 years ago I was diagnosed with Fibromyalgia, which at that time, barely anyone had even heard of, but with a wonderful dr and much trial and error with treatments and meds, I was able to retain my orthopedic nursing (which means a LOT of lifting and pulling, if you know what I mean). Then, beginning very mildly in 2009, I began to have short bursts of confusion, an occasional hallucination, and bouts of imbalance and coordination issues. NOT great symptoms to have as a nurse, by the way. Anyway, because it was all pretty sporadic and I had 2 children used to having a roof over their heads and all that other stuff I did to spoil them. But the problems becameworse and more frequent and developing many other lovely ones as well as lots and lots of lovely new ones until, after several "discussions" with my supervisor, I finally messed up bad enough that I was terminated in Dec 2010.

Over the past year and a half I have seen doctor after doctor and had test after test. I have good days, bad days. Mostly bad since I finally 6 weeks ago gave up my extreme denial and allowed my nursing license to expire. I now have nearly constant tremors, the confusion/hallucinations are worse, the vision, coordination, and balance issues so bad that I now require a walker even in my own home. And, more. As I am sure many of you understand.

I have had far to many tests, etc to get into all of that. However, if someone could help me with 2 of the last 3 MRI's (3rd one was only 2 days ago so I know nothing yet.) In May 2012, I had a brain MRI without contrast that said "volume loss and white matter disease identified, nonspecific but far greater than expected for age." In August I had a MRI of the cervical spine with and without contrast that showed "nonspecific but extremely prominent abnormal signal in the pons on the sagittal T2-weighted images, vast change from MRI dated May 2012" and then also said "minimal multilevel degenerative disease C 4, 5, 6, and 7 but the central canal and the neural foramina are patent." I know enough to realize that that second part is just degeneration and old age is catching up with me 15 years early...lol... But the first part, esp combined with the 1st MRI with only 6 weeks or so between is where I need help.:confused::confused:

I have, as I said searched and searched using different boards, different ways of wording my questions, and I am so certain that MANY of you have been through the same thing, so I would really appreciate any help you can offer...

Thank you!!!

Hi everyone, newbie here
 

New members to the MS forum please introduce yourselves here so we can welcome you! :)


Ok, I'm new. At least, at age 63 I'm new HERE. :winky: I'm Robbie. I used to be active, healthy, happy, pain-free. . . . .now I'm just working on being happy. I was diagnosed in 1992 with Hep-C and took Interferon-Alpha treatment for 4 months. Afterwards, I was blessed with Hashimoto's, Chronic Depression, Anxiety, M.S.--and the spiral continues. I worked full time up until last November, when I fell at work and broke my left shoulder and tore the rotator cuff. They let me go in December and I took early retirement. Am currently working with a lawyer to jump through the SSDI hoops. Ah, such fun:eek:

So, hi everyone!

Robbie

hi dianne and welcome to NT,

i am so sorry for your situation and i can feel your desperation.
do you have a good internist/pcp? could he refer you somewhere or pave the way for you to be seen emergently?

is there a large medical center in your area or a teaching hospital where you could be seen?

as i'm sure you know keep meticulous records for your file of test results and mri's. other drs will want those.

please keep in touch with us as you are able.
i'm praying for you. you seem to be handling this in an expert way.

i'm an RN too and had to resign in '05. i havn't lost as much as you but i understand.

Welcome Dianne and Robbie to NeuroTalk, nice to meet you. :) :hug:

hi robbie and welcome to NT,

i hope you get the ssdi. working with a lawyer is a good idea.
i wish i had done it the 1st time around but i have it now.

hope to hear more about you.

Hey yall, MS DX'd this year, still learning to coup with things. Most of the day to day things are back to normal. I've had 2 episodes over the last few years. My first one went away before I could see a nuero and he didnt order an MRI. Saw him again this year after my primary ordered an MRI and he sent me to a specialist at UCSF (4 hours away!) UCSF maybe far, but super people down there! Anyways, just trying to figure things out and talk to others. Thanks for having this sort of thing available!

Welcome to NeuroTalk Jadd, nice of you to join us. :):hug:

Hello jadd,

Welcome to NT.

There are plenty of logs around this fire. Please feel free to pull one up any time, sit a spell and chat to others about anything that you are going through or are working on figuring out.

With love, Erika

New
 

I am new to the forum and am hoping to find comfort and understand of MS as I am going down the path of being diagnosed.

Welcome Hismom, Great to have you join us. I hope we can help you along the, sometimes long, DX road.:hug:

Hello
I'am amPlias2, this is my first time writing anything since I joined in June 2012. I am excited to be here,amongst my fellow travelers on this MS journey.I was D'x in 1997 following my dream honeymoon in Paris. Now isn't that a kick in the teeth? Today I say sike! to MS, I am still here and I refuse to give up control of my life to this disease.
Later My Friends

Hello and welcome home Amplias.:hug:

Feel free to join in our exhilerating convos at any time.:)

Hi there, my name is Mel and im 25. Been suffering from atypical trigeminal neuralgia for aboutttt...8 years now. Many times during this years i have felt my pain might go, or i was positive of cures and such. Recently i have come to the realisation finally that this will likely affect me my whole life...others just dont understand and feel i am being negative. I am new here and just want to speak to others who know how i feel. I have almost constant aching and pressure in my upper and lower jaw, makes me want to rip my teeth out, also severe migraines, i also get shooting pains at random times in the affected areas..there are no triggers...its just there whenever it wants to torment me. I was told since i was a teen it was my teeth that were bad and have had much dental work but things only got worse, then i thought maybe i was mad..im just recovering from a caldwell luc and FESS surgery to remove a huge cyst that was found in my maxillary sinus on the same side of the pain, they found large areas of bone missing too :(. I always remember describing my pain as..'i just feel like my face is dieing' to which many doctors sort of scoffed. Apologies for the whining, ive never joined a forum before and today has been a hard day. I hope all people here who are unwell and those joining can find support in one another, peace :grouphug:

Hi Mangamel and welcome to NeuroTalk
I just wanted to leave you the link to our Trigeminal Neuralgia forum as you have posted this on the MS (Multiple Sclerosis) forum

Here is the link to the TN group
http://neurotalk.psychcentral.com/forum26.html

Thank you for your reply. Sorry i did not notice the different forums, making my post in the TN forum now :)

Welcome to NeuroTalk, Mel, nice to meet you.:)
We have a lot of peeps with MS blessed with TN as well, so thank you for visiting and ur welcome anytime.

Sorry for your pain..:hug:

New to group
 

Hello everyone! I was diagnosed w/ MS April 2012...been on Avonex for 7 weeks now...at the full dose for 3 weeks, titraited for the 1st 4...these side effects are CRAZY!! Has anyone had this happen...they get the injection, feel crappy for a couple days, feel better, but suddenly feel crappy again for a few hrs?? Especially facial flushing?? Scared me to death!! My one Dr feels I had an allergic reaction, whereas my neurologsit says he thinks I picked up an infection. Well...it only lasted (the flushing) for like 2 hrs...then gone! Thanks for any advice...

Hi Cathy, welcome to NeuroTalk..:)

So sorry for your MS DX. You've come to the right place for support and friendship.

I was on Avonex for 7 mos. The sides never diminished and I chose to stop it. It was a quality of life decision.

I don't know what to tell you. If you think ur Doc is right about you having an alergic reaction, then stop and maybe try another one?

Good Wishes..:hug:

Hello from North Dakota
 

Just saw this MS specific "new member" thread.

I have MS, diagnosed in the first part of 2010, symptoms dating back to '95 or so, just never serious enough to warrant going to the doctor as far as I could tell.

With no insurance, if I didn't need to go to the ER, the doc was never really an option for me until MS hit hard at the end or '09.

Anyways, hello.

HI Dile, welcome to your new home..:) So sorry for your DX of MS but, glad you could join us. Please make urself Comfy.:D

We are here for each other, when noone elsr understands..:hug:

hello
 

Hi, Im Alicia, i was diagnosed april 2010 with RRMS.
I cant decide if I should go to the hospital or not. I need some advice...
Im having a major flare up. The left side of my face went numb a month ago, and a week ago, I began experiencing Optic neuritis in my left eye. Now I feel like im getting a cold, and 2 days ago I began experiencing Vertigo. I feel super weak and feel like im gonna drop to the floor every 10 min.
My doctor seems too busy to get back to me, he did order an MRI last week and Ive taken 5 days of oral steroids, but things are just getting worse. I want to avoid any permanent damage to my eye. Any advice?
Thanks

Hi Alicia. welcome to NeuroTalk..:):hug:

Newbie here, my tale....
 

Hi everyone, my name is Terri, diagnosed w/ MS yesterday 10-3-12.
Cried me a river yesterday..and a lil this morn.
Onset of my journey was 8-24-09 w/ numbness beginning on right toe, then left toe, then slowly day by day working itself up to my waist during the course of approx 3 weeks.
Then thankfully it all began to reverse week by week from the waist down this time & all sensation came back except for residual loss of feeling from knees down, I know am officially a Weeble as I know wobble.
MRI's showed lesions, 1 on brain, other on t-spine, no o-bands.
Diagnosis was Transverse Myelitis.
Thennnn fast forward to a lil over 3 years & approx 2 months ago I had a harsh spasm in the right arm for days on end, after it ended my upper right quadrant was numb, stayed that way for 2 weeks then all feeling came back.
Neuro visit called for more MRI's & another dreaded LP, lesions show no growth, lots of changes in c-spine but no lesions & the results of the LP came in yesterday showing O-Bands & something about my eyes, I was too shocked/scared to ask/say anything.
Dr asked if I had any questions & I simply nodded No thru my sissy tears & of course have now thought of a zillion questions to ask her.
Now I have to have a Evoked Potential ? test & some special IGMCNO (i made those letters up, i could barely hear her thru all the thoughts running rampant in my head) blood test for my eye or brain ? Foggy here now.
And they have a nurse coming to show Hubby how to give me shots of Avonex because these hands cannot stick a needle into this body...I decided !
And I'm confused, who says I'll have another spasm incident & need meds now ???, I'd never been ill a day in my life until 3 years ago so all this is so new to me.
Sorry for the long long tale, so much to read, learn, about MS, TM seemed like a cake-walk now.
Off to read more of the message boards now, thank for you for listening ~ Terri
p.s. hope i posted this in the right spot, in the right way :)

Hello there tenthreetwelve and welcome to NeuroTalk, but I'm sorry that you needed to join us here.

First, let me say BREATHE! Take in some oxygen and breathe. It's an awful lot to take in at once but please know that nothing is urgent at this stage, so you can take a little time to take stock, collect some information and make some valid decisions about your ongoing care. It doesn't matter much whether you start medications this week or next, so don't panic.

Please take a little time to read and ask questions. We're a very friendly lot here and you will always find an understanding ear and a shoulder to lean on.

I hope that helps a little. Sending some understanding cyber hugs .... :hug:

Hello so glad I found this site!
 

Hi my name is Jenna and I live in SC at the base of the Blueridge Mtns with a bunch of sheep, chickens, 2 dogs, a 7 year old and my husband.
I was first diagnosed at age 26 in 1998 but after years of doing well on avonex and never having a brain lesion they took away my diagnosis. I got sick again and a cervical lesion got me rediagnosed, but no one was really sure until 2011 when a MRI showed 10 brain lesions. Everyone is on the same page finally and I am on Tysabri now, but I have had repeated infections soooooo, the Neuro wants me to stop taking it. I feel like it is the last chance drug and I am scared of going off of it. But we will see what this month brings!

Welcome 10/3/12.:) Is that your measurements, your IQ orhow long you're staying?:D Nice to meet you. Please do come on in and join us

Welcome Jenna, nice to meet you too. You shouldn't be on TY, if you have an active infection. Try something else.:hug:

Koala77, Hello & thank you for reminding to Breathe and the for the welcome to NeuroTalk. The crying jags are less by the day...I am sort of a sissy.
I read the message boards till late last night, sooo much to absorb.
Thank you again ! Terri

Hi Sally, you made me smile regarding the 10/3/12, to be honest with you I couldn't think of anything original for a 'member name' so I came up with my MS diagnosis date, somehow I think this date will be in my head for some time.
Nice to meet you as well !
Hope I am replying to all correctly.
Terri

Thanks for the welcome!
 

I am not computer savvy Obviously!
:confused::eek::rolleyes:
I will figure it out!

hi terri,
welcome to the group. along with breathing try to take one day and one thing at a time.

be patient and gentle with yourself, and your dh.

hello coranne and welcome to NT.
this is a great bunch of people for info and support.

New as of 10/8/12
 

Hello,

I am new to the site. I just posted a thread about pernicious anemia and MS that should be up soon. I am constantly having symptoms and searching for what they are. It is frustrating that MS is so hard to diagnose, because that is what I think I have.

Thanks!
Lola

Welcome Lolad..:):hug:

Hi, I have been having symptoms since June this year. It started with problems with my feet (tingling, burning & pain on walking) My GP diagnosed peripheral neuropathy.
I also developed really itchy arms, to the point where I make them bleed with scratching.
My eyesight has got worse as well. Things look very blured & I can see what looks like little clouds or puffs of smoke with both eyes.

I feel really tierd even when I have had a good nights sleep.

On a few occasions I have not been able to remember simple things, but I do remember within a few seconds. e.g I could not remeber how to plug my sat nav in, in my car...I just didnt know where to plug it in to.

I have been feeling the need to pass urine frequently for three weeks & have been to the dr who said there was blood & bacteria in my urine & gave me antibiotics.These have not worked aftger 4 days, so a urine sample has now been sent to the hospital for analysis.

Had a full blood screen which was all ok.My xrays & ultrasound showed nothing.

I had a nerve conduction test 3 days ago & am waiting for the results. I also see a neurologist on 13th November.

Could this be early signs of MS??? My symptoms have got gradually worse wiht no relapse.

Thanks for reading.....this is all very scarey.

Things havent changed much in the last 40 years. My GP also DXed me with PN in 1974, but he smartly made an appt. for me with a top notch Neuro, who subsequently DXed me with MS (after many tests in the hospital).

Welcome to the MS forum..:hug:

Please let us know what the Neuro says.

I will let you know yes.
Do you think it could be MS ?