MS Forum Introductions
 

Our other introduction thread was getting too long so I've posted the link to the locked thread and we'll use this new one for our MS Forum Introductions! :)

http://neurotalk.psychcentral.com/thread150052.html

Hello, new here
 

Just joined up last week (I think). Have been battling weird symptoms that hang around for 3-8 weeks then leave since January 2013. First episode was trigeminal neuralgia. I am still undiagnosed. Last specialist (neuro opthamologist) shortlisted multiple sclerosis, NMO, infection such as Lyme, and vascular cause for all the weirdness going on. Waiting for a new set of mris, EMG/NCV and someone (my neurologist) to make a decision! Even if that decision is to send me in another direction rather than just more waiting ...

Right now ... dealing with muscle twitching, painful electric zings in both legs, recurring right side weakness, cog issues (worsened by the Lyrica I'm taking for the first two things I'm sure), and escalations of some other stuff if I get fatigued or overheated. It's been a weird ride for the last year and a half ... and if I focus too much on what I was able to do a couple of years ago compared to now ... well :eek:. This has been an emotional roller coaster for me, as it is for all of you.

I joined up with neurotalk because all along I've been getting "not likely ms" from various neuros and there are forums here for some of the other things that have come up ... (some of which have fallen off the list at this point).

Hope it's okay that I visit, even if I'm not yet dxed!

Welcome Cedar, nice to met you. I hope your DX is not MS,
but then, there are worse things! You are welcome here, even
though you are unDX. I hope we can help you through your DX
journey.

Good luck.:hug:

Thank you for the welcome, Sally :). And yes, there are worse things for sure ... first neuro thought brain tumour and I was very happy when my mri came back only showing measly little lesions (which everyone dismissed) versus the tumour he was expecting!

And ... your puppy is adorable!!!

New intro
 

I have just received my MRI report and a clinical correlation for ms is suggested. So I go back on the 5th for my follow up.
So I am not sure what to expect. I have read about a spinal tap - are they able to test for spinal lesions this way or will I need another MRI?
I imagine they will need to rule out some other things like lupus. All of my info is based on the MRI report. I have not had any one explain it to me yet.

in the right and left periatrial areas - faint T2 prolongation along the adjacent deep white matter. Marginal to the splenium of the corpus callosum.

I was going to call in today and see if they can move up the apt a few days. Just because I am impatient.

Only symptoms are double vision with one eye closed (both eyes - right eye worse) head aches with stiff neck and fatigue.

Other than that I am 29 and have two young children. One is starting prek and the other is trying his best to start the terrible twos at 18 months haha. :)
Married for 10 1/2 years and counting.
I have hashimotos thyroiditis for 4 years also. -- although I was just diagnosed with the antibodies a year ago,.

MS . . . or not
 

Hi Summer,

Sometimes diagnosis can be so exasperating. The wheels turn so slowly. We understand. Below is some advice I share with anyone going through the diagnosis routines.

Be patient. Begin a wrritten, personal log or diary of your symptoms, your doctors' visits, (with dates, doc's name, address and phone number) all in-office exams, tests and their results and all prescriptions In writing.

Obtain and keep all other test results, blood, urologist's visits and tests, LP's, EVP's, MRI films and the film's written report because you'll need them in the future, no matter what your dx is. I guarantee it. And the physicians must, by law - HIPPA - provide them to you, if you ask. Ask.

Like so many others, I've been through it myself, much of it 20 years ago at my own PPMS diagnosis.

If you have questions, this is a good place for answers, opinions, and recommendations.

Summer,

We know how exasperating getting a diagnosis can be. I forgot to answer your LP quetion.

No, an LP does not indicate spinal lesions; an LP tests for oligoclonal bands

Here's info from Wikipedia:

"For the analysis of cerebrospinal fluid, a patient has a lumbar puncture performed, which collects some of his or her cerebrospinal fluid.

Each of the two to five oligoclonal bands seen by protein electrophoresis represent proteins (or protein fragments) secreted by plasma cells..."

To look for spinal lesions, yes, MRIs must be done. Depending on your physical symptoms, you may need MRIs from the C-spine (Cervical lesions generally affect the area above your shoulders, your arms, wrists and hands), your T-spine (Thoractic lesions can indicate lesions that affect your chest muscles and abdominal muscles regions)

The L-spine (Lumbar - affects the leg muscles), and the S-spine. (Sacral - bowel, bladder and sexual function) have less common MRIs.

See: http://www.disabled-world.com/artman/publish/spine_picture.shtml

ah ok. Yes that makes sense.

Another question then.


How do you know what to bring up with the dr?
I have some incontinence issues but I also had a 8.9 and 10.7 lb baby. and have some prolapse that contribute to that.
I have a degenerate disk in my s1 vertebrae so I have had nerve pain in my right leg and back pain for years.
Do these need to be brought up?

I have swelling (or what feels like swelling) in my legs and feet and have been told that would be from hashimotos.

I just wrote them down in my journal last night to bring up but I don't want to bring up stuff that might sound like ms and it not be. I feel like I should let my body speak for itself for the new tests.

PPMS here, hello
 

Hi all,

Diagnosed a year ago and I'm still struggling with the feeling that maybe it's something else.

I have seen all my results, spinal tap: positive for O-bands, mri: lesions from c4-c6, etc but my progression has seemed very slow (thankfully), which makes me wonder.

So I'd love to hear from others who were walking pretty normally when symptoms began, to a point when it was CLEAR that things had changed.

I'm curious as to how it changed. Did the tingling change to numbness and then to weakness? Or were those symptoms seperate? What did it feel like physically?

It's funny, about two months ago I started getting a little more active on line. Really just two forums, but since then I have actually felt quite a change in my legs. Arms as well.

I'll leave it there for now. But ya, holler back.

Form what I understand it is the process of elimination. If they didn't see anything else like lupus etc... you still have demyelination and that is treated with the same meds if you were MS or not. (not a dr though)
Some people only have one or two relapses their whole life. :) Maybe you are one of the lucky ones. :)


I am not yet diagnosed but I have several lesions in my brain and will be going to the ms center of atlanta soon for the LP and other tests. Other than double vision/head aches, I dont have any other clear symptoms yet. That I can't say are thyroid related or that I have to run to the bathroom when I sneeze because I had a 10.7 lb kid lol.

However, I will say trust your gut and ask questions at your next appt or make one so you can talk to them.

Thanks,

Guess I should make what I'm saying more clear:

Suddenly in March of '11 my entire right side seemed numb-ish, and tingly. My bp was very high, so off to the ER. All tests negative. No obvious stroke, etc. Did a few weeks of physical therapy just in case it was a tiny stroke.

I felt a little stronger, but the tingly/numb feeling stayed. So I tried to resume my life. All though I quit my job as a truck driver because my foot never felt right again.

Along with the numbness, I had incredible fatigue. HAD to nap about every six hours for a few weeks, then that seemed to improve slightly. So a year went by with every activity I did being limited by this fatigue and I noticed my right side actually feeling weaker. So I went to a neurologist and got a work up.

My exam was ok except for some pretty bad balance issues, hyperreflexia, and ankle clonus (sustained).

So All the usual blood tests were taken Lupus, Lyme, AIDS, etc. All neg. Then the spinal tap, which showed multiple oligoclonal bands. So, likely MS because the brain and spinal mri's were still negative. This was fall of '12. So that doc suggested copaxone. I simply could NOT give myself the shot, so I stopped it. Plus this doc said secondary progressive, which it's not really intended for anyway.

So, I still continued on assuming it was MS, but kind of wondering why I wasn't having any remittance, or worsening (to speak of). But through 2013, it was feeling more obvious that something was changing because my left foot was starting to feel like my right, and the right side continued to get weaker, so I went to an MS center in Ohio, and there they got a better MRI which did show lesions in my neck area, so with that and my presentation he went with ppms. (Currently both feet have numb patches, I am weak all over. Arms, legs, torso, etc. My head always feels like I have a hangover. Just fuzzy, thick. Like the beginning of a flu. Been like that since the start.)

So now, a year later, I am worse but not like some. I can walk, just if I do walk any distance, like through a grocery store or something my legs get super weak and wobbly. So I'm very limited in what I can do. I couldn't even go for a 3/4 mile walk without suffering for 3-4 days. But I begin to wonder if maybe I'm taking too much baclofen, or I actually am getting weaker. Also, in the past 2-3 weeks, my right arm feels like there is a sleeve over it, and it's getting weaker. I almost dropped a pot of hot noodles draining water out.

That's why I want to talk to other ppms'ers in depth about the worsening and what it actually feels like.

Hello biddi4 and welcome to MSWorld :)

I'm not sure why you discount the diagnosis of SPMS and question having PPMS instead :confused:

The majority of those diagnosed with MS are usually Relapsing/Remitting overtime it is not unusual for a person with RRMS to transition to SPMS. It is possible for someone to go years in the RR stage without even knowing they have MS. By the time the person realizes something is wrong it's possible they have already transitioned to SP. Secondary Progressive is typically know for progression whether slow or fast.

Regardless of what "type" of MS someone may have we can all deal with some of the same difficulties with mobility, abnormal sensations and everything else MS is capable of.

Spinal cord lesions are well known for causing mobility problems. This happens in all types of MS.

I have had mobility problems from the beginning, at the age of 24. My biggest challenge with this disease has always been trying to maintain my mobility. That for me means, working with a Physical Therapist when needed and an on going exercise routine. This has been the case for 28 years :(

In any case, it can take sometimes years for a Neurologist to determine where a patient falls (RR, SP, PP).

I'm not sure I helped with your question or even made you feel any better but please keep asking questions ;)

Hi Biddi4,

Welcome to NT! :welcome_sign:

We have a specific thread for SPMS and PPMS'ers but usually it's very quiet. Most of the MS'ers here just post on the MS thread or The Stumble Inn. You're free to post wherever you choose but the majority of our MS members post on the MS forum. I''ve included the link to the sticky thread for the SPMS/PPMS thread. :)

http://neurotalk.psychcentral.com/thread108560.html

Thanks, people.

Ok, it's been a year since a doc that I respect and trust says it's ppms.
Even though I said early in the post that I wasn't sure, I actually do believe him.

My only sticking point is, why is the progression so slow?
I'm stuck with being limited in what I can do. But since I can still get around, life demands that I keep going.......which completely kicks my butt!

So, I wonder how others that have ppms now, felt early in their disease when things got more difficult. I want to compare things with them to see how long before it gets worse for me.

I'm in limbo because, I can still function but functioning really takes a toll on me and I don't know whether to push through and risk getting weaker too fast, or rest as much as possible in order to preserve any strength I do have.

All of what I described is what makes me just a little unsure about what I have.

I realize that there isn't much that can help any of the demyelinating diseases, but I kind of was the most accurate picture of what to expect down the line.

With everything that I have read, I can't find very many people that describe their symptoms like I do.

I will hop over to the other ppms page and see whats up there as well.

I think I have MS
 

I have seen my regular doctor and a neurologist, both who seem to think I don't have MS because nothing showed up on the brain MRI. I have several symptoms including feeling of a tight corset, blurred vision, numb spots and strips, itching, tingling, problems with walking when tired, tremors, fatigue. The blurred vision just started recently and is really scary! The neurologist said I have a tremor but wants to send me to U of WA for more testing. I am tired of being poked and prodded and living on $197 a month the state gives me. I finally hired an attorney. None of these doctors want to take the responsibility of telling Social Security I can't work anymore. I am waiting for a hearing and it could be at least 15 mos. Why will they not listen to me? I have asked them to advocate for me several times. Now they are passing me off to the university and God knows how long that can take! I just want some answers.

Hello gruvingal,

There is a diagnostic criteria for diagnosing MS, The McDonald Criteria:
http://www.nationalmssociety.org/For...osing-Criteria

There is no single test, by it's self, which can rule in/out MS. However, the McDonald Criteria relies heavily on the MRI.

Your Drs. are listening that's why they have given you a referral to the U of WA for more testing. Many conditions/disease as well as vitamin deficiencies and some medications can cause symptoms similar to MS.

If you are taking any medications you may want to do some research into the side effects. If upon doing research into your medications, if you take any, and find some or all of your symptoms could also be side effects of any medication(s) you are on then please discuss your symptoms with the prescribing Dr.

Medline is a good resource for researching medications and their side effects:
http://www.nlm.nih.gov/medlineplus/

New here
 

Hi, I’m Christi, 41, and do not yet have a diagnosis yet, but have some neurological symptoms that come and go. I have one lesion on my brain, have had a clear LP and clear VEP almost 2 years ago. I have just had a 3rd brain MRI with no new lesions. Hope to get to know y'all soon!

Hi Christi and welcome to the club. I hope if you turn out to have MS,
you have a mild and, a slooooow to advance, case.:hug:

Thank you!
 

Thanks, Sally! I'm ready for any kind of answer!

Getting checked for MS again
 

Hi everyone. I usually post in the peripheral neuropathy forum. My symptoms are progressing--more numbness, tingling, muscle soreness & cramps. Legs that feel like jelly. Tight feeling in abdomen that comes and goes. Brain fog that is new for me. My last head MRI was 2 1/2 yrs ago, and entire spine within last 4 yrs. Crystal clear, all of them. I've never had an LP, but my neuro is finally doing it. He says my progressing symptoms are very suspicious for MS. It's been over 12 yrs of symptoms for me, and I just don't know how to feel about it. Thanks for listening :)

Hi Jenng and Welcome to the MS forum of NeuroTalk.:hug:. So sorry for your increase
in and progression of your SX. I hope that you and your Neuro can get to the bottom
of it and figure it all out. It's the not knowing that is so stressful.

Please let us know how the LP and other tests go and stay as calm as you can. The
stress only makes all your sx worse. Be kind to yourself.:hug:

Should get my results this week...
 

My brain MRI was 2 weeks ago and LP one week ago. Yesterday I called my neuro's office since no one had called with any news. Surprisingly, he called himself late in the day and left a voicemail (sooo mad I didn't hear the phone ring...grrrr...) He said he would have his assistant make time for me this week for a follow up appointment. This sounds foreboding to me. If everything was fine, I'm thinking he would've just said so on voicemail. I'm trying to just not think about what if's. But honestly, my anxiety is through the roof. :(

Hang in there. Let us know. We're here for you.:hug:

having a supra pubic catheter put in
 

hi everyone! my journey towards diagnosis and treatment is long, angsty, and boring. four years ago i was getting by, and then i developed what i was told was CRPS/RSD. doing PT gave me stress fractures and my treatment has basically been to just take a ton of meds and hope for the best. my PM doc is the best, but he's at his limit of what he can do.

after my massive pulmonary embolism in 2012, my blood work indicated that i had lupus anticoagulant and with it came a lupus diagnosis for a few years which, when the neurological symptoms (twitching, shaking, jerking, weird fits that aren't officially seizures but are seizure like, vision disturbance, complete urinary retention, etc etc etc, i know you all know the song) became so overwhelming, the rheumatologist said 'not lupus' and sent me on my way.

my neurologist is an epilepsy specialist who seems less concerned that i'd like, given that my life has stopped. anyway. i'm terrified. i'm so tired of being a mystery, i have no one in my life who gets what it is like to be sick or hurting all the time. my husband is a fantastic caretaker, now, but this isn't what he signed up for- so i have the guilt there.

anyway. i've been rocking a foley catheter for most of the year but it gives me the most awful ureathral and bladder spasms, controlled by a combo of oxybutynin and buscopan (unless i walk, sit, breathe or irritate the catheter at all). last friday my urologist confirmed the urodynamics showed my bladder is completely dead, no indication of muscle movement at all and said he'd get me scheduled for a supra pubic catheter sometime in january (the hope is i'll be able to sit and walk again) and then they called and gave me an appt for tuesday, this tuesday. i'm terrified. just of everything. my life is one big question mark, i can't handle being a person who just lies in bed. so hi. i'm rae, if you have advice or friendship on offer, i'm accepting and will reciprocate! :grouphug:

:circlelove: ((((((((Iritatedkitten)))))))) :circlelove:

The scary future...
 

I know when you hear the MS possibility it is one of the most nerve racking and scariest of thoughts. You have all these questions bouncing like rubber balls and ping pong balls all at the same time. Calm yourself...MS like all things bring about change, the 'what if's will take care of themselves as they come along.
Your lifestyle is going to change, but you don't have to change Who you are. You are going to be the same you with or without any disease. My Pa always said you can't change ugly and you can't dirty ice. lol I've found he is right. MS is ugly, ain't no denying that one. You however can be the ice. Ice is one of the most destructive forces in nature...hey, guys...it took down the Titanic...so be the ice.
I was told after my dx in 2001 that I would be in a wheelchair within 7 yrs or less. I am still walking, and have pretty good mobility. I have had some tough times averaging about two relapses a year that put me in the ER and right on to patient care for two weeks at a time. That ain't fun but I do what I have to and you can tell by my picture I still got purty going on!!
I hope the best for all of you but getting the dx shouldn't change who you are, you been you all your life. It is not time to stop doing that, it is time to come to a place where there is caring and understanding people to help you answer all those questions. There is also crazy...like me waiting to pounce on ya when ya least expect, so hang in there and I'll save a seat for you on the porch.:grouphug:

I like this welcome sign.. http://www.braintalkcommunities.org/...come-group.gif From another Forum.

Results
 

The MRI of brain & spinal tap is negative. I have something, but not being caused by MS. Thank you for listening & your support. (((Hugs)))

Not Too Sure What Is Going On
 

I was diag. with MS in 1974, in 2014 fall was told (by my neuro) that I have a Neurodegenerative Disease. I Googled and found it to be an umbrella disease with many things under it, including MS.

The reason for the change is that I have symptoms of several diseases, the neuro said he will treat the symptoms as they occur but he can't treat it as a whole. He said it is obvious that I have a neurologic disease but since I have symptoms of several it's hard to treat.

Anyone else know about this?

Welcome Bob. I'd push your Docs for a definite Diagnosis, if I were you.:hug:

awaiting a dx
 

Hello everyone, I'm new to this. I am 42 year old female. Started falling down a lot in October 14. Doctor noticed drop foot and sent me to Neuro. Had an MRI of brain and showed multiple lesions. Then cervical MRI showed a couple small bulging discs but no lesions. Plan was to recheck in 6 months. Then in January I woke up not being able to feel or control my right leg. 4 hours in the ER to be told I didn't have a stroke. Then dragged my leg behind me for a couple of days til I got a brace. Back to Neuro, LP, came back ok. Now scheduled for 2 more MRI of spine. Still needing brace and a cane to get around. Very fatigued.

My family is not supportive at all. They say things like, don't think about it and you'll be fine, what to you have to be stressed out about, you need to stop having these tests done you're going into debt over what, other people have MS and still work, why can't you.

Hoping for answers soon

Welcome Tock. :). Your Family is doing what a lot of Fam members do, at first.
Go into a state of Denial. If I were you, I'd go with them, until. you find out
differently, or untill your symptoms can no longer be denied.:D

Happy to have you aboard. Complain to us, we understand.:hug:

Suprapubic Catheter
 

Hi , Rae,

I've had PPMS for 20+ years and I've had experience many of the suggested treatments and assistive devices available.

I've had a suprapubic catheter for over 4 years. I would be happy to answer your questions regarding it or regarding other issues with which II have experience.

I was famous for having 1,500 posts on MSWorld, then requesting my account be deleted entirely when I had an argument with admin over the PM option being removed.

=)

Hi.

32/M/Australia =) DX Oct 2004, had since I was 15-17.

Old info.
 

Just wondering why there aren't many recent posts related to MS. If I click "New Posts" there are several pages of new posts but none seem to address MS or DBS.

Hi Karen,

At the top of this forum are a number of what we call "Sticky" threads. Below those is the main forum.

You could start a new thread perhaps and explain your situation and the information you're looking for in that. I left you a message on the Movement Disorders Forum with a link to the FAQ as well. That might help you with navigating. If you need more help please let us know.

Start new thread if you want by clicking on the link below -

http://neurotalk.psychcentral.com/ne...newthread&f=17

The "New Posts" button will only show you the latest posts on all forums.

If you want to search for something specific to MS then use the Forum Search Feature and when that's open, scroll down to where it says "Search in Forum/s" and check the Multiple Sclerosis Forum box.

Searching Forums & Threads

Best fit here
 

I have just been diagnosed with white matter disorder, which is akin to MS, so I am posting here.

I am 62 and have incontinence, trouble walking/stumbling, muscle twitches, and memory and thinking problems.

Hello to you all! :) :hug:

Hi there,

I’m a female in my early 20’s who’s been partially diagnosed with MS. Still awaiting my formal declaration I guess. Everything has been recent, it first started a week ago when I got sharp pains in my eye. My vision has been affected and I’m really hoping I can get some treatment soon so that I don’t losome sight.
Hoping to learn from here so that I can better take care of myself.