Welcome Nimrodel. nice to meet you. Wow dear you are so young to be strapped to this neurological nightmare.:eek:

I'm glad you joined us and hope you stick around to keep us up to date on how you are doing. Anythingh we can do to help you along your diagnosis journey, we will be happy to do.:)

I hope your TM gets better soon.:hug:

Hello and welcome, Mary Sue. I am so sorry that you may have MS (and while caring for your daughter w MS at the same time).

I can not give you any advice on the Cervical Stenosis. With MS, you may know that it does often take some time to diagnose. Please let us know what the conversation is on Jan.30th.

Also, you will get more replies to specific questions if you start a thread asking that question below.

See you around the board,
ANN

Welcome Mary Sue, so glad you found us here at Neurotalk.:) Your DM & DD both have /had MS...wow...what do you think your chances are.:eek:

My DD also has MS:mad: and right now she's in total remission. I pray she stays that way forever. she's 42...MS since early 30s.

Nice to meet you.:hug:

I did have contrast. It is odd. They want to redo the mri's again, but it's too soon I think. I'd like to wait a while, it's too much at once for me. Get past the optical crap first. I don't know exactly what the lumbar puncture showed, but they said it was positive. I just don't get it and am very unsure. I may want to get a different set of eyes on my tests after the optical part clears.

MS x 2
 

Hi everyone,

I have been very recently diagnosed with MS and am caregiver for daughter with advanced MS. From the information I have found it is unusual but not rare to be diagnosed with MS at my age (I am 73). I am also diagnosed with Crevical Spine Stenosis. Needless to say I am a wreck. Anyone have an "advanced age" diagnosis of MS? If so can you give me any advice?

Thanks
Mary Sue

Welcome to NT Mary Sue,
Hope that someone here has some useful info for you.

With love, ERika

Mary sue, I think I already welcomed you once, but welcome again..:) I like you already, you're one year older than I am.:D

I think you have a good chance of having MS. Keep us up to date as your Doc possibly diagnoses you.:hug:

dear nowakes,

your findings both clinical and otherwise would seem to suggest MS.
can you get a 2nd opinion? that might put your mind at ease. once you can get a dx you might be able to start a tx.

don't rush into anything you're not ready for. make the dr explain to you why
he wants the mri's again this soon? maybe the films were hard to read, or weren't done right? in which case you shouldn't pay again.

my advice would be to start to keep a medical file on yourself. that means
getting copies of your mri's on a disc and getting copies from your dr of your test/lab results. if and when you see other drs it will be helpful to show them the files.

the reason i feel strongly about giving this advice is that as i was building my
case for a try at SSDI, which took 18mos, i was finally denied and told they hadn't received some vital info etc. well, my dr said it had been sent. ever since then i've kept my own records. i had to hire an attorney and won my appeal. but what a costly and stressful journey that was.

now, I'M NOT saying you will need disability. i'm only giving a good example to keep your own records.

hi mary sue,

i'm so sorry about your dx and your daughter's.
i was dx'd at 53 and that was considered late by my neuro.

if you need help with resources you can call your local MS society at 1-800-FIGHT MS.

please let us know how you are.

Hi I am new here. I'm really glad I found this!:)

hi susan, welcome to NT,

tell us a bit about yourself. do you have MS?

I'm glad you found us too Susan.:)

Come back soon and tell us how we can support you.:hug:

I am new to this forum
 

Hello everyone, especially you wise and compassionate elders.
I wish to be clear: I do not have MS, I am a first-year nursing student.
My purpose is to increase my knowledge and understanding of what it means to be living with a severely debilitating chronic disorder, and my focus is MS. It is my hope that this knowledge will benefit everyone that I am in contact with as I pursue a career in Health and Service. I am interested in everything from symptoms to treatment, successes and failures.
I have been reading some of the posts available to me and am quite touched and impressed with the stories and the compassion and wisdom of many of the respondees.
If it would not offend you, I would "hang out" for a while, from time to time here, ask you questions and laugh and cry along with you. Again: my intent is only to be of benefit to anyone with a debilitating (or not) chronic disorder.
May I participate in your discussions?
Jim :)

it's ok with me...
i was dx'd with MS in '03. i had an increasingly bad gait disorder, was very fatigued and heat intolerant. i was lucky. i was dx'd in 2 mos. i had to give up a 35yr nursing career. i worked intensive care and spent most of that time in NICU. i was devastated when i finally realized i couldn't cut it anymore. plus i had some cognitive slipping. i really grieved for my job when i emptied out my locker.

i still am able to walk with a cane but my tolerance for sitting, standing and walking is limited. so is my stamina. i'm still very heat intolerant and will get short of breath and almost paralyzed if i get too hot. i just can't put 1 leg in front of the other. there are times i have to go to bed to recover.

i've learned over the yrs to be gentle with myself. i've learned patience. i walk at a snail's pace but i walk. i've learned to pace myself; to conserve energy so i can do something else i want to do.

hope this helps a bit. welcome.

Need Suggestions
 

Hello, My name is Amy. I am so confused right now. I have had signs of MS for going on 2 years now. Last summer my symptoms for worse, especially on hot days. I had always went to the tanning bed for years and had no problems. Last summer I went twice and could not go back. As soon as the tanning bed and room heated up I would get blurred vision, dizziness, numbess, tingling, heavy legs. Also, my hearing seemed like it would go in and out. To be honest I felt like I was drunk. After about 12 minutes in the bed I would have to get out. As soon as I started cooling off I would be back to my normal self.
I tried going to my families swimming pool and felt like that also. The symptoms were so bad I had to go home and get in the air conditioner. Then, the achy pains came along with numbness that comes and goes just about every day. It is like my symptoms are like clock work. Last summer I also had 2 episodes where my vision in my left eye went blurred and 1 hour later a headache came. October 2012 I decided to go to my family doctor and he referred me over to a MS Specialist whom I just had my first visit with on Jan. 10, 2013. The MS specialist continued to suggest I have "Small Fiber Neuropathy".
He did send me for a MRI of the cervical and thoracic spine, which he says he seen no lesions and he is diagnosing me with Small Fiber Neuropathy. If I am reading correctly about Small Fiber Neuropathy it is only common in diabetics and alcoholics? I am neither. I need some suggestions as to what I should do. Should I find another MS Specialist or Neurologist? Should I go to an eye doctor and have them look for damage to my optic nerve since I have had 2 episodes of blurred vision?

Hi...I can completely relate to your post! I have been having VERY similar stuff going on with me now for a year and half. I have not yet been diagnosed either. I also have been told that I have peripheral neuropathy. In my opinion the term neuropathy is very general and seems to refer to anyone with nerve pain. Just my opinion. Did you also have an MRI of the brain? I had no spinal lesions either. My advice to you would be to see another neurologist and hopefully get some testing done. Also it's important to check your vitamin levels particularly B12 and D. If B12 is low it causes all kinds of nasty neurological symptoms and the D can be causing some of your weakness. If you choose to see an eye doctor I think a neuro opthamologist would be best. I have read this a lot of places. The only thing I see different between you and me is that my symptoms never come and go.. they are always here, however I have recently quite drinking and consuming "diet" products as well as artificial sweeteners and my nerve pain has gone down A LOT. I only periodically suffer from burning pain and tingling mostly when I am resting. I really hope you get some help and figure this out!!

Welcome Amy, nice to meet you. Yep sure sounds like a MS symptom. I would get another opinion if I were you. What tests did the Doc perform?

Come back and let us know what you find out. :hug:

Newly Diagnosed
 

Hello everyone. I was diagnosed just under two weeks ago although my neurologist is saying I have had MS for 6 years. When I first experienced this weird tingling feeling, my doctor told me that I was crazy. So for 6 years, I've been dealing with a variety of symptoms. About 3 yrs. ago, I diagnosed myself, based on a ton of information online.
In November my left arm, hand, neck, and head started tingling. I finally told my doctor that he needed to do whatever necessary to rule MS out and wouldn't you know...3 lesions on my brain and 3 on my spine. I feel relieved because now I can begin to treatment but I am NOT excited about the daily Copaxone shots. I'm currently waiting my all of the approvals to start the medicine. It's hard talking to my family about this so it's nice to have a place to share with people who are experiencing the same.

Welcome home to Neurotalk, Dominique, Nice to meet you. So sorry for your DX, but I know what you mean when you say it's a relief to know. It could have been worse.

Come right in and join us. we're happy to have you.:hug:

hi amy and welcome to NT,
with the sx's you describe i would seek a 2nd opinion. get copies of the mri on a disc and ask for a copy of your dr's dictation. start a medical file on yourself. you can always call your local MS society and get references to other neuros.

it seems to me that a brain mri would have been helpful. IF you have MS the dr will look for certain lesions in parts of the brain. i too am very heat intolerant. i get the same sx's and am almost paralyzed if i let myself get too hot. you will learn how to manage this. listen more to your body and get cool as needed. walmart has $5.00 cooling collars that help keep you cool.

i think your idea of seeing an opthamologist is a good one. anytime you have changes in your vision it's a good idea. let us know how you're doing.

hi dominique,
i'm glad you found us.
my pet peeve is when drs say you're crazy or it's hormones or depression.
that's my cue to find another dr. imho.

i'm glad your's made the dx. i was on copaxone for 10yrs and did well with it.
you get used to the routine. i was glad to trade the daily shots for not having flu-like sx's with the interferons. shared solutions i found to be very helpful any time i called with Q's.

let us know how you're doing.

New Member
 

I'm new to this forum. It seems like a great place to get good information and make new friends. I was dx about 12 yrs ago, but it sometimes seems everyday ia a learning process. I look forward to getting to chat with the members and gathering more information. I hope everyone has a nice and day. :):)

Hi Dixiebell and welcome to NeuroTalk! :welcome_sign: Join right in any discussion that peaks your interest. This is a great place for good information or just to hang out and have fun. :)

hi dixie and welcome to NT,

hope to hear more about you.
i'm spms but am relatively stable and still drive.

Welcome home DixieBelle..:hug:

So nice to meet you
 

Great being able to network here with individuals like myself. I was diagnosed with MS in 2000, I took injections of betaseron then avonex for 9 years. So one day I go into see a new neurologist, he says I think your have an incorrect diagnosis. Sends me through tests again for the 8 hundredth times. Having done annual mri's for 9 years and multiple other tests. He then says we don't feel its MS. I felt blessed, a miracle, I asked to take me off the shots immediately. I was ok for about a year with few episodes, I contribute it to the elation of a miracle. After a year went by, one day I stood my legs buckled under me and move erratically had no control lost balance and fell hard. I was rushed to emergency and they ran all the same tests only this time they said , we are sorry, you do in fact have MS. This just shows you not all Drs are informed to MS. Thinking a neurolgist would but found out not all do unless they have a caseload of patients with MS. So instead of being hurt and mad about the miracle not being so, I embraced God even tighter, knowing I will need him even more now. Lesson I guess is to get other opinions besides just one, get several and do the tests.

Hi, my name is Lori, I'm a 49 yr. old female from NY.

I have been suffering with scoliosis & my aging spine. I said good bye to my pain mgmt. doctor this morning. Wonderful man, but he just could not help me. I think he tried every narcotic thinkable, but they all make me nauseous. I've also tried epidurals, nerve blockers, trigger point injections, etc. I just had an MRI done 2 wks. ago & am heading into NYC to a orthopaedic surgeon at the Hospital for Special Surgery. This is were I've come to. My pain is no longer bearable.

Hi Lori:)
you have posted on the intro thread of our Multiple Sclerosis forum and I am wondering if you may want to rather post on our Spinal Forum here http://neurotalk.psychcentral.com/forum22.html

New to NeroTalk
 

Hi
My name is Rachael, I was dx'ed with MS in 2002 when I was 30. It,s been a rough road, but my husband, and son keep me going. I'm glad I found a place to chat with others above this monster of a disease! :grouphug:

hello freysgirl and welcome to NT,

i'm glad your family is supportive. we're a great bunch of people who can help with info and support.

hello MS Dx,

i'm not surprised to hear your story. some docs have it and some don't.
2nd opinions are always a good idea. i've been on copaxone for 10 yrs and my neuro said i could stop. i've been very stable the past 10 yrs. i hope i don't end up with a relapse like you did. time will tell i guess.

but welcome. i'm glad you've joined us.

To M.S. or not to M.S. that is the question.
 

Hi
My name is Mike.
I live in Wales next to England U.K.
I have M.S. and I like to talk and live live to the full.
Just saying Hi to one and all.
I have placed this web site in my book mark bar, may be I can help in some way, and may be you can help me also, time will tell.

Stay happy one and all.
Mike

Hi Freysgirl and Mike. So glad to welcome you here to NeuroTalk.
So sorry that you both have been DXed with this lousy Disease.

This is where you should be. I hope we can be of comfort and help
to you.:hug::hug:

Hello
 

Hi All,

I'm Sam from the UK.

I'm 31 and I'm in the middle of the testing process to see if I have MS. It's been really helpful looking over this forum over the last couple of days so thanks.

S.

Welcome SamL:)

I wish you well with the testing.:hug:
Check in with us after your Appt. and let us
know how you do.

Thanks Sally!

Will do.

Anybody here with Neuromyelitis Optica?
 

Hi everyone. I know Neuromyelitis Optica isn't MS but this is the closest forum there is here. Some members suggested I try here.
I am waiting on test results for NMO. My symptoms related to pain seem to be getting worse. And it's a weird kinda pain and is accompanied by the feeling of "heat" either in the skin or joints. It was thought to possibly be MS until the doc got a better look at the spinal lesion.
I live alone and taking care of myself is getting very hard but when do you decide it's all too much? And what comes next, a nursing home? I'm really discouraged now. I've been having trouble for a long time. I have a Neurologist, Psychiatrist, a Counselor and Pain Specialist, but none of them actually "experience" anything I'm dealing with. That's why I'm here I think. I'm really just stumbling around here. I've never joined a site like this with "forums" and I haven't figured out how to reply to a response without getting an error message. I'm probably just not doing it right.
Anyway....Help?!

Once again...Welcome to NeuroTalk, Purple Paisley :)

I would like to re-post the link for The Guthy Jackson Foundation. All you need to do is click on the link to get to the website. :)

http://www.guthyjacksonfoundation.org/

The Guthy Jackson Foundation has a lot people, with NMO, who woukd be of help and support. Some with NMO also frequent MS forms.

To reply: When logging in click the "remember me" box, click "post reply" and when finished click "submit reply." You need to have a certain amount of posts before you will be allowed to post links. If you are using the "quote reply" just delete the link in it, if any --- until you are able to have links in your replys.

:hug: No. Once your Neurologist figures out what is wrong treatment will hopefully improve how you feel :hug:

I don't know what medications, if any, have been tried for your pain but treating neuropathic pain (nerve pain) can be trial and error. Usually regular pain medications do not help with Neuropathic Pain. Some antidepressants can help, Neurontin, Lyrica, Benzodiazepines...it just depends.

I know other members will have some ideas, thoughts or suggestions :)

HII was told i have MS in 2011, an i am upon this website an im glad i did.I can finally talk to people who are going through similar things like meeeee :) :grouphug:

Hello Tenice and welcome to NeuroTalk.:hug:

So sorry as to why you're here but glad you found us. I hope
you like it here and I hope we can be of help to each other.

Everyone here understands what you are going through,
so don't be afraid to share. Tell us a little about yourself.:)

Happy to have you here.:)