River, I was back in maine in early Sept. to marry off my oldest soon. It was great. I pigged out on cheap lobster, fresh corn, apples and every kind of berry. The weather was beautiful. I visited all my favorite places and hooked up with friends and family and did my last tour of doctors in the states.
,
I love the Caribbean, the weather, the pace of life, evreyone's expectations are lower, a good job, it's a good fit for me. I love ME but I just can't deal with the cold.

So nice to chat again. What's up with you? Did you have a good summer?

Welcome, Thumper (love your name..:))

Just come on in and join the Family.I hope you like it here. :hug:

Hi, all you newbies! :Wave-Hello: Welcome to NeuroTalk!

Sorry I'm so late, life has recently been very odd for me.

I see a couple old faces, glad you found us, jump right in, the water's warm!

welcome bombi and thumper to NT.
there's so much info here and so much to pick from.
great resources too.

hope to hear more about you both.

boy, island life sounds so....relaxing. is it like Gilligan's Island? :D

I'm late at welcoming everyone too, as have been offline~ So, w/that being said

WELCOME EVERYONE!!!

New Member
 

Hi there,

I feel a little embarrassed logging in to this group as I don't yet have a definite diagnosis. All I have is a neuro - inflammatory condition and/or an autoimmune condition, possibly MS with MD, lupus and/or celiacs disease ........ . This is as far as I have got after 2 years of seeing neurologists and an endocrinologist for some two years. This lack of a diagnosis leaves me feeling desperate as I don't know how to proceed for the best or justify my condition to those around me. At the beginning of this year I had to give up my career and I now exist in a limbo which at the age of only 53 is very dispiriting.

Currently, I have multiple white matter brain lesions, muscle wasting and weakness in my left leg, sensory abnormalities (burning, pins and needles, numbness) and periods of stabbing pains above my left ear. I also have occasional purpura on the top of my feet (lasting 3 days), hives from my shoulders to hands (lasting 45 minutes) and a swollen tongue and throat, leading to a husky voice. I wake each morning with really stiff muscles and find it difficult to not to sleep all morning. But worse of all, I have lost sexual desire and the ability to orgasm, despite having recently regained some feeling in that area. This has lead me to feign sexual pleasure to keep my husband happy and maintain my marriage. After two years, this pretense is proving to be a strain and my the sense of loss is enormous!

Any advise/information would be appreciated.

hi merle,

welcome to NT.
i'm sorry you're in limbo.
have you had a spinal tap?

i don't have any advice right now, sorry.
but i'm glad you found us.
hope to hear more of your posts.

you might start a thread on the MS forum. i'm sure others may be able to help.

Hello!
 

I met twinkletoes last weekend and she invited me to check out the support here. Thanks! :)

Welcome Bombi, Thumper and Mom. We're glad to have you here, even though we're sorry for the reason you had to come. I'm sure you'll find it to be as helpful and informative here as I have.

Reply to Sally's request .
 

Sally, and have been DX with MS for 32 years, with symptoms dating back to 1964. :eek: Yep! Long Time. The good news is, I was in remission for 18 of those years. I am now SPMS, can still walk, but use a scooter around the house and for outside distances. I walk as often as I can, so I won't lose the ability.

I am on LDN (for 3.5 yrs) to steady my MS and Paxil for Anxiety. I have used Avonex and the Copaxone in the past.

Tell us about yourself and ask any questions you want. We are here to support you in your fight and your coping with MS. We might even have some fun, while you're here.:D

Best Wishes,[/QUOTE]

Sally,
my name is amorehead3. Yesterday was my first visit to this sight.I had no idea there were so many people who are suffering the same pains as I do .I am to have my first oc nerve block on the 4th . I have a little better idea of different things that can happen but hopefully I will have good result. I too have had headaches for years. Mine have been shown to come with mini strokes and has left lot of dead areas so that my blood supply is less than needed .I too am so tired of all the pain. I have noticed that most with oc seem to have ms. That is scarey.. i have fibromyalgia too, border diabetic(diet controlled.) I just don't have the energy to get in habit of taking walk. I have a total hip replacement of left hip and 3 bones broken in my left foot at the ankle so I have a plate and 4 screws in there. I have such a time getting up an down now. I'm 73 yrs old and I did have pt for each thing but I have just gotten weaker now.No energy. But hope this block clears head enough that I can re-energize my body. I wish you a blessed recovery and a healthier future. God be with you and comfort you.
:)

Thank you Amorehead, for your nice intro. I hope you do not have MS...CU is enough. I also hope your nerve block does the trick and you have a bunch of pain free energetic days to come.

Welcome to our little, NeuroTalk, neck of the woods..:) Come on in and enjoy..:hug:

Hi,

I am a newby and althought I don't have MS, I am very sympathic to you all as my husband had MS for 10 years. He passed away three years ago due to his multiple illnesses and not to the MS.

I actually found this forum when I was searching recently for some answers to my sleeping disorder.


Hugs to you all,

Grammyto09

Welcome Grammyto9, from a Grammy to 8..:)

Thank You for joining NeuroTalk and You are Welcome here. So Sorry for the loss of your DH. I lost mine 5 yrs ago and it still seems like yesterday..

There are many helpful forums here and I hope you find your answers here. Tell us a bit about your DH's plight with MS..

:hug:

First to the new members and everyone else, my apologies, I keep forgetting this thread is here, I would like to welcome, Amorehead3, grammyto09, Mom2Five, bombi, Merle, to Neuro Talk and the MS forums, you will find this is a great place, so many cool people here, helpful and kind, again hello and welcome

New to this site
 

Hi my name is Lauri and I was diagnosed with RRMS 4 years ago. I started on Avonex, then had to change to Rebif, and now on copaxone. I look forward to getting to know you all. :)

Hi Lauri and welcome to NeuroTalk..:)

I'm so sorry as to what brings you here, but glad you found us. We are a good group of people suffering from MS as are you and we understand.

Come on in and join the party. Tell us a little about you and your fight with MS. Most of us have been there, done that, so, if you have any questions...ask away.

Be sure to visit the Stumble Inn, where we have a little fun.

:hug:

New here
 

Hi, my name is Michelle I am new (of course). I have not been definitely dx with ms. I go this Thursday to the Mayo for the news. I was told at my last appointment with the doctors and after all the test that it was either definitely (sp?) or MS. I was also told a blood test could rule out Devics, I am not sure about this. My concern is my vision. I have never had vision in my left eye. Just one of those congenital things. The only down side to that was I could never drive. Since February my vision in my right eye has been shot and foggy and pain in the eye and that is what got me to this point. The drs feel that I have previous attacks of ON and this last one since February just was the final blow. The doctors notes say "impaired visual quality in right eye with constriction of the visual field, some segmental optic disk pallor, and nerve fiber loss on OCT study." He told me that there was nothing to be done to repair my vision and the plan would be to stop the attacks. I have had the other quality, numbness, tingling, pain, falls, foot drop, foggy memory for years but never sought treatment until it effected my vision. And the neurological exam showed weakness on left side and tremors (who knew) and all kinds of other information that I really don't care about right now. And yes I've had MRI's galore and blood work galore, but they just aren't my priority right now. IT'S My vision. It's hard to take. I have been on short term disability from my job for a month because I work in a credit dept. and work with financials and spreadsheets and numbers all day and anyone who has experienced ON knows you can't make out numbers. And with magnifying tools it just makes the numbers bigger blurs. I guess I just wanted some place to let this out. I am frustrated. I just want to wake up tomorrow and go back to work. My husband and daughter have been wonderful, but my extended family stinks. First they bring it up, not me, then proceed to tell me "well it could be worse" "thank goodness ms is a slow condition" "atleast you don't have cancer". And I agree it could be worse, and I am grateful I don't have cancer, but comments like this make me feel like my concerns and fears and frustrations are not valid. Like I should tell myself "buck up". Your vision is shot and there is nothing you can do about it, so get over yourself. Which just isn't very helpful. THANK YOU for letting me RAMBLE on and on, and I am hoping I will find a lot of useful info from your site. :D

Welcome home, Michelle and we want you to think of NeuroTalk, as your home away from home..:)

Most extended Family suck, as for understanding what we are experiencing..:( I am so glad that you have an understanding, caring Husband and Daughter.

Please come on in and join us anywhere. We are here to help each other through the tough times and we DO understand. If you have questions, we will try to answer you.

Again, Welcome..:hug:

Hello Lauri and Michelle, welcome to NT, Sally is right it is a home away from home, such warm friendly and helpful people here, its a godsend. Do not hesitate to post concerns questions and as you will see occasionally we all let out a venting rant once in a while, the people here is what makes this site so wonderful, again welcome to NT

Hi
 

Just found out about you guys yesterday. I sent out a brief intro and then my energy went dry and I started fading. My name is Doxiemama and Friday I will have a new doxie. My only child doxie is Dixie and she is almost 10 1/2. We are adopting a 3 year old rescue doxie if the trial period is successful and we will name him Dexter. I also have a very supportive husband, although he does not talk very much and a 19 year old in junior college. I haven't worked since the end of January and usually keep myself busy. I've got my volunteer application in at my son's elementary school and will be going tomorrow for the first time to a group that meets bimonthly and are big on volunteering. I also help out at our local ms center when they need volunteers. Big problem with volunteering is pacing myself, so I have to be careful about over committing myself. The ms group I have gone to in the past is not a real cohesive (I'm not sure that is the word I'm looking for) group. They come for the topic and or food and don't mingle after. Bottom line is that due to my ms of a little over 3 years, I have a problem with nerve pain and fatigue which I'm working on controlling. I supposedly have remitting relapsing. Event though I have steadily gotten worse since my dx. my doctor is reluctant to give me the dx of secondary progressive until I am unable to walk. I use a cane all the time. Can do a little walking without, but need walls and furniture. I also use a walker or scooter depending on the distance and day. Isolation is a big problem since I'm more homebound and my husband's not a big communicator. I'm pretty good at adjusting and adapting, but have my "days" as we all do. Well, that's me.:)

Welcome Lauri, Michelle, Doxiemama, and all I've missed recently up here in the "newby" thread! I'm sorry for all the carpy reasons you have to find us, but glad you found us..If you need comfort, information, opinions, or just a relaxing place to have fun, this is the perfect spot..Again:

welcome everyone,

i'm sorry for the reasons you're all here but glad you found us.
all we can do is our best and take one day at a time.

i hope we hear more from all of you.
thanks for your intro's.

Welcome!

This is a supportive, caring group of people. The best and welcome to the family.

Aw..I forgot this was up here! So I am short!:mad:

Anyhoo! Welcome to all the new people! Glad you are here!:welcome_sign:

I'm one of the "Slowbees"! My apologies for not coming in sooner and my welcomes are piled on top of all the others! :D

Sorry you all have to be here, but glad you found us! Jump right in and make yourselves at home! There's LOTS of info available here and if you need help, just holler and someone will jump in and set you on the right course!:)

Hi and welcome!

I look forward to reading more from each of you. Hope you are well today. Jules

Hey Newbies - jump right in. If you see a thread you like, post. If you have questions ask in your own thread. I've learned more here than from MS specialist Neuros. When you have MS you really understand.

hello Doxie, welcome to the club, thanks for your post on the Wheel chair thread

xisled..aka roger the geek
 

hello i will introduce myself to all those her that dont know me.


in feb 06 i woke up one ay with fire from the waist down , within the next five days i had lost the ability to pee , deficate, i had the is enourmous back pain that was unbearable, then i couldnt walk.

flash back a few years to mid 96 i started to get very fatigued at work, and noticced pins and neeedles in my thighs but thought this was work related because my job was a very physical one. but recognised the symptoms as my youger brother had alread been dxd with ms and had simaler affects.


i spent the better part of a month in the hospitla with every specialist in the area looking at me and figuring things out. but i had made it a point to get an lp and do mris at the time of the flare or whatever it is.

the lps came up positive for ms with over five bands on thier scale. six months later i had anothe rlp it was positive with two bands.

so far all my mris have been cler. but was dxd with ms by a nurologist and did the avonex for a year.

then out of the blue the same nurologist said never mind your mris are clear thereore you dont have ms but instead you have transversemyelitis. his superiors came to the same conclusion and the so called ms specialist in sf tlaked with me for five minutes did a review of my reords and said no ms. what an ****.

here it is almost three years later. thighs still getting electric shocks, legs and feet go hot and cold, i have continual back pain. get foggy, slur my speaech when rushing it, im very fatigued all the time and take power naps which actually keep me up a good portion of the day. with insomnia. wwhen i do sleep heavy i wake up in pian and never sleep over three hours without the use of ambien.

my medications include,

morphine- 15 mg 3x daily
percocet- 325 mg as needed for breakthrough pain.
gaperpentin 3x300 3 x daily used to be 4x300 3 times daily
vitamin b-12 100mg daily
lisonopril- 20 mg once daily
simvastatin- 40 mg onece daily
hydroclorothiazied 25 mg once daily
prozac once daily
and a stool softener because of pain meds.


before i got sick in 2006 i wouldnt even take an asprin for a headace id usually just tough through it.


i believe my symptoms were cause d by traumatic shock from a nose breaking three weeks erlier and then a bad cough that lasted a week aster that. the night before my symptoms started i had a cough attack that lasted almost an hour that was so heavey i thought i thre out my back.



i am 45 years old a retired chef, a geeek since 1977 and enjoy my time with my computers and cars. i mamarried for 12 years now and have been unemployed since i got sick. it took me almost two yers to get back to 75 percent stregnth in my body. i have a service dog jake which is a queensland heeler who almost never leaves my side.


i serverd in the airforce from 82-86 and was raised in the navy.


thanks for reading.


roger.

Hi again Roger, and thanks for the introduction. :)

Have you had a chance to read this thread yet?:

http://neurotalk.psychcentral.com/sh...verse+myelitis

There aren't too many of us (FORTUNATELY!!:eek:) who've had the pleasure of a severe TM attack, but I know how difficult this last two years will have been for you. :hug:

TM can be a stand alone dx, either caused by an underlying condition like MS, lupus, etc., or even idiopathic. I understand why they are reserving the MS dx at this point, if no lesions are showing in your brain yet, but the writing is probably on the wall if your bro' has MS. :(

I waited 12 yrs after my first TM attack, before getting a MRI of the brain (obviously I had spinal lesions) ... but I didn't see any point in knowing if there was no treatments available. Even now, my doctors don't recommend any of the mainstream meds because they haven't proven effective for mostly spinal lesion activity. :(

When I had a second TM attack, which is HIGHLY unusual, they finally saw 3 small brain lesions. Even if they hadn't found the 3 lesions I probably would have been dx with MS, because I had "dissemination in time and space" by that point . . . but the 3 brain lesions made the dx a slam dunk.

TM can leave us with a lot of unresolved symptoms, and seems to continue to do it's damage long after the event too. For that reason it can be hard to "notice" when the "new" symptoms they may be 'waiting for' crop up (that aren't related to the original TM attack) . . . The "defining" event for you will likely either be a 3 - 4 week period of completely new symptoms (i.e. a clear "MS" attack), another TM attack, or new spinal lesion activity (symptoms) that goes further up the body (making it obvious that a new spinal lesion is flaring). Alternatively, it will likely just take TIME before the brain lesions show up on their own.

Since my doctors were not keen on putting me on the CRABs, even after the brain lesions showed up, I searched the internet for alternatives. In the end I got on LDN, and it has been a life-saver for me. Based on the number of pills you are popping now :eek:, combined with the delayed dx (and treatment options), I would suggest you give LDN try!

Cherie

Nice intro, Roger..Thanks and WELCOME to NeuroTalk.(officially:D)

Thank you for your support so far and I hope you will let us support you, when ever you need it.

:hug:

Hi.

New to this forum...just joined! I found it through a post on another forum. It's funny, I recognize a few people from that forum and even one from Ravelry....I think, is that you Erin? :)

A few basics about me-
I have MS, live with my sweetheart of a husband, am a mom to four bunnies and I knit like a mad woman.

Looking forward to "meeting" you all!:grouphug:

Hi Mrs Bones, and welcome to Neurotalk. Come on in and join your new Family. :hug:

Greetings to all of the new members, sorry for the generic greeting to all in one shot, I hope you have found threads to post on and ask your questions, Like i say in the welcome forum this place has some really wonderful, helpful and fun folks, and their friendships have been a blessing so many times, again welcome and do not hesitate to ask and or join in on the fun filled threads, we dont bite, well most of us but they got their shots so its all cool

Hi Everyone....going through my second round of testing. First round was in 2001. Neuro sent me on my way with this statement "if it is MS, then it's a very mild case and you will most likely not have any more issues with it". :mad:

I was so disgusted I just went on about my life and lived it to the fullest. Now, 7 years later, I'm in an other exacerbation of something...whatever it is....and to be quite honest...this woman who is scared of very little is very scared of what is happening now.

But, I will do my research....I'll be seeing different neuro's and maybe we can get some idea what is truly going on.

I look forward to meeting ya'll and I wish you all the best.

:hug:
seara

A great big Welcome to you, Seara..:hug:

Hello
 

Im Brenda aka Roadie.

I can't remember if I've been here before.

I have been being treated for m.s. for 8 yrs. I was on copaxone, but was just switched to rebif. Im scared to try it. I already feel crappy as it is, and don't want to feel worse. any thoughts?

Nice to meet you all. I've been a member here for too many yrs to recall.

Hi Brenda and Welcome to NeuroTalk... Pull up some velcro and stay awhile.:)

I'm the wrong person to ask about the shots. I swore off off all poisons, years ago..:D.. I did give Avonex and Copaxone a try, though, I've not tried Rebif (just a stronger version of Avonex)

Come on in and start a thread about it and many Peeps will come to your aid and answer your questions..

Again, Welcome..:hug:

Hi MrsBones and Seara and Roadie and welcome to NT, even if you have been here before!:)

Hello, MrsBones, Roadie, and Seara and welcome to NeuroTalk :)