Roll call - Who's Here these Days?

[Lulu54]

We have picked up so many new folks around here and of course our long time community members are still here.  I am thinking it might be helpful to start this new thread and have everyone give a brief introduction of themselves  - perhaps the who, what, when, where and why of what brings you to this forum?  Please help to keep this up on page one so we can get a larger snapshot of who is present.  


It doesn't have to be anything elaborate - I'll start as an example.


I'm Lulu54, and was diagnosed with RRMS in 2008. I am on copaxone and my MS appears to be stable for now.  My diagnosis was fairly easy because I have a classic MRI with lesions/enhancing lesions in all the right places and a neurologist who doesn't believe in delaying treatment.  Also, I am one of several co-community leaders here on the MS community and am passionate about advocating for all of us.

Who's next?

[Lulu54]

welcome to the forum here.  I'm glad you found us and this is a very smart,compassionate group of people with MS.

You may not have noticed you posted your history on a very old thread and many people may not stop to read it.  But I'm so glad you found this one - perhaps others will also add their history to the list.  

See you around, Laura

PS the shopping cart is my best friend in store, too!

[ms100202]

Hi! I'm Candy To start off I have ADHD (diagnosed age 3), bi-polar, depression, and MS.  I was diagnosed by accident in October of 2002. I was 31 years old. I went to a neurologist for migraine problems and was sent for an MRI. When he got the results back he put it up on the white lighted board and started circling these white spots. I thought at first oh boy all my drinking has caught up with me. He tested my reflexes my walking I was unsteady and couldn't walk in a straight line. He then turned to me and point blank said "you have MS" he then had his nurse give me the Avonex, Betaseron, and Copaxone information packets to look over which treatment option I'd like to choose. He then sent me home. I was dumbfounded and shocked. He then had his nurse call me to schedule a spinal tap, and an optical test. The spinal tap confirmed it positively and I started on Copaxone immediately. I'm deathly afraid of needles and it had the auto injector so that's the treatment option I chose. After a few years side effects were bad so in 2004 I switched to Rebif. The side effects were bad too so I switched back to Copaxone in 2005. I was on Copaxone til July '12 then I stopped treatment altogether because my permanent skin damage from the darn cursed Copaxone see article on Lipoatrophy my arms and legs looked real bad from the treatment injection sites.(http://ms.about.com/od/glossary/g/Lipoatrophy.htm) Also Copaxone felt like a bee sting every time I did the injection. Copaxone had to occur every day. That was like torture for me I'm surprised I lasted seven years on it. When I saw my Neuro in Sept '12 he suggested Avonex as they now had the auto injector pen too and the treatment was only once a week! YAY! I've been on Avonex since Oct 26th the side effects are flu like symptoms but I'll take that any day. Avonex is much better by far. My history I know I probably have had MS for awhile. I was always clutsy broken bones 7 times from falling or running into things, burning myself alot so much that my Doctor prescribed me that SSD cream for serious burns, and cutting myself not on purpose but while just doing tasks like cutting vegetables. I really don't cook much anymore it's too confusing for me. I forget if I added something or not and there's too much going on at once. I have RRMS and I just had a flare-up Dec 10th my left arm became partially paralyzed but it came back about 98% I still have residual effects from the flare-up like tingling and twitches everywhere on my body. My lower right leg went completely paralyzed for about 2 minutes the other night I don't know if that's possible but it happened. It scared the crap out of me. I was looking on the forum here for something on the subject of intermittent paralysis in MS I mean this was only about 2 minutes. When my left arm went it was partial paralysis and came back 8-12 hours later to almost normal. Is it possible to have a paralysis that short of a time span of 2 minutes? Also in different parts of the body roaming like this? I had a flu vaccine Nov 30th maybe that had something to do with it I don't know. My last flare-up before this one was in 2008 it rendered me to a scooter I was in that for about a year. Then I upgraded to a rollator, then a cane. Now for shopping no cane I can go to the cart return stall grab a cart and use that to assist me to walk from the parking lot to the store if I need to go shopping. I now found this site here and am grateful for that.
Thank you all in advance for your assistance, and expertise with my disease.

Cheers

Candy

[DiannaKw]

Hello! I'm Dianna, as some of you may already know. I am a 25 year old waitress in a LTR, no kids, a sick dog and six cats, with aspirations of finally going back to school ASAP for a hospital unit clerk certificate, then hopefully off to SAIT to become a respiratory therapist. What can I say, I like hospitals! Go figure.

My personal brand of MS first manifested mid 2010 (I think) ...began with a week of double vision and shortly progressed (as I sat in the ER waiting room for 8 hours) to near total paralysis of the left side of my face. When I finally got to see the doctor, I was swiftly diagnosed with Bells Palsy (my fellow Canucks would recognize this as a condition I shared with Jean Chretien... or so I thought)

I was given a prescription for a round of steroids and a requisition for some blood work and an MRI (because you never know, I guess) and the rest is history. It looked like classic MS, if their is such a thing.

I was subsequently diagnosed with CIS (by default) until my next reported relapse this past November, when one of my eyes got lazy and decided it didn’t want to turn left. I say *reported* because I didn’t go to the doctor for a seemingly minor intermittent exacerbation (leg fell asleep for a couple of months).

After another MRI, it was officially deemed MS - my doctor recommended that I start on a DMD, and that’s how I ultimately ended up here! I began treatment (Rebif) a little over a week ago, and so far so good.

I'm happy and feel lucky to have stumbled upon this community of incredibly warm, kind, welcoming, understanding, supportive, and above all knowledgeable people on the interwebs.

Eternally grateful

Dianna

[JaneK1975]

I am glad this thread got bumped because I got to learn a little more about of bunch of you who have been around longer than I have. It's been great to get to know you all.

I'm Jane. 36 with no kids. I was diagnosed with RRMS on 12/27/11 and started Copaxone 02/02/12. I arrived to the forum while I was going through the final stages of testing, just a few weeks before my diagnosis. My dx came quickly because I have a bunch of brain lesions in classic MS spots and a couple "black holes", plus a c-spine lesion and o-bands showed in my CSF. I hope to learn strategies for staying healthy and avoiding another relapse (or riding the wave gracefully if one hits). This forum has been a life saver.

- Jane

[sandythegeek2]

Hi I'm Sandy. I'm a 49 yr old single mom of three grown daughters. They are my biggest joy. I haven't been dx yet. I started coming here around April 13th 2012. Very new.

I have had strange sx like a few times in the past 4 or 5 years my legs collapsed on me when getting out of bed, clumsy, muscle spasms, stiffness. My right arm went numb and dead towards the end of March. It was only temporary. I went to the doctor due to ocular migraines. Eye doc said my eyes look fine. My GP asked me if I've had balance issues. When I said I have occasionally, she ordered an MRI. That's when I found out that I have extensive periventricular white matter lesions and some of me are large. Neuro said I might have ms. I have a lumbar puncture scheduled for May 15th.

As you can see, I'm super new in this MS world and was shocked to hear this. I knew nothing about it. I've been googling like crazy and found this forum. You have all been so very helpful. I have been very scared and you all help calm me down. It's a scary thing to discover but like some of you have said, it's not a death sentence. I would much rather be told I have ms than cancer.

I'm reading this forum daily, desperately trying to learn from all of your experiences. I'm hungry for knowledge. I'm frightened but hungry.  If I find out that I do have this, I am ready to fight. I will not let it take me down. I look to all of you to share your experiences to help me get through mine.

If I find out that I don't have it, I will still watch my symptoms for changes and I will still continue to learn more. Maybe there will be an ms walk here in my town that I could walk in.

Thank you all for sharing and guiding and caring.

[candy158]

Hi, I am Candy... 54 years old, married 33 1/2 years, have 2 wonderful children , and 4 1/2 grand babies as well...

Only dx'd Jan. 2011, from Vancouver at UBC..... been through hell and back, and still am fighting for a full dx..

Just started Copaxone 11 days ago, so, not an expert on that yet.

I have been on this forum since June 2010, and have had and met so many wonderful people.  This is still the best place on the web for information and support...

I was a nanny for 28 years, and have been retired now for 2 1/2 years, due to symptons, and physical problems.  

I started this journey, with Optic Neuritis, that hit while on holidays in Mexico ... then the MRI .... and there are lots of lesions on my scan.  My spinal tap was clear, and we are still having troubles with symptons and have caused my neuro to become perplexed about my situation.  So back to UBC for me in June.

Good Luck to you,
Cheers,
Candy

[sdtbftone1]

My nameis steven.i was diagnosed with RRMS October 2000. I retired from teaching children with special needs June 2003. Was awarded SS disability 2006 summer. Since I also have ADD, I am constantly on l
The lookout for anyone who has an MS DX and also has ADD. Cognitive impairment is my major problem, to quote Jeffrey Gungold " . . . my wheelchair is in my head . . ."

I have found quix 1 posts very informative.

[Quixotic1]

I'm Quix and I began right at the beginning of this forum in April, 2007.  This was right after my diagnosis of RRMS.  I was a practicing pediatrician until 1999 when I was floored by intractable vertigo, something we now know was the beginning of my MS at age 47.  I was diagnosed by the 8th neuro I saw for my problems.  And, yes, that formed a lot of my scorn for neuros who declare a specialty in MS, but know piddly about it.

I was first on Avonex, stopped due to cost, but also found out it was causing suicidal ideation.  Now, newly on Tysabri and seeing a boost in energy.

Major problems, spazzing right leg with weakness and drop foot requiring a brace.  Total bigtime incontinence with periodic major, epic flooding.  I dance with Trigeminal Neuralgia (bilateral).  Increasing paresthesias, a flirt with the HUG, bigtime fatigue and blurry brain.  Hand Eye coordination laughable.

Most lesions are brainstem and cervical.  They are few and small.

I am newly back to the forum after being very scarce for nearly a year.  You guys are my life's passion.

Mama Quix

[Lulu54]

oops! I just picked inadvertently Johnnymutt's answer as the best answer - and even though his reply made me smile, everyone's answer is the BEST ANSWER.  So please don't be offended - I really don't select a best answer because I appreciate everyone taking the time to write a reply.

Thanks everyone for jumping in and letting us know who is here.   I'm especially happy to hear from all you lurking inthe shadows. I'm glad you are still here and still finding value in the many words written.  

[MsmsinFl]

I'm MSMSINFL, and was diagnosed with RRMS in 2009 at the age of 59.  I live in Central Florida.

My only-ever symptom (loss of sensation on one side) was the one that sent me to the ER, where I was diagnosed ASAP based on MRI & clinical exam;  I then had 5 days of inpatient IVSM which resolved the symptom by day 2.  

I subsequently got a confirmatory opinion at Mayo Jacksonville, and now have a local MS neuro, who is OK.

I've been on Rebif 22mcg since diagnosis  and my MS appears to be stable for now, with no side effects from Rebif.

My diagnosis was fairly easy because I have a classic MRI with lesions/enhancing lesions in all the right places and a neurologist who is very aggressive about starting DMD & doesn't believe in delaying treatment.

[Jacksmom516]

Hi I am Jacksmom -(Tracy)  I found this forum in August of this year once I was referred to a neuro by my orthopedist.  I have been seeing different orthopedists for 6 years now all of whom said I had a torn tendon in my foot and they have sent me to countless physical therapy appts! It has only been since this last one that they thought something else is going on - have had 2 of four MRI's Waiting on blood work results to look for mimics.  Biggest sx are foot drop, severe limp and balance problems. Also do have Thyroid disease.  In hindsight have probably had this issue for some time since I have always had balance and tripping issues but everyone just said I was clumsy! Have not had any vision or hearing issues as of yet nor any reall cognitive issues but have noticed my memory isnt what it used to be!

Do love this forum as well as limboland forum.  You have all become a 2nd family to me to help me understand what is happening and that everyone here can understand me!  The people in my everyday life do not get it because they do no live it every day like all of you!

[shoshin]

I'm shoshin. I joined in November 2007 after I was dx'd. For about six years before that I was told I had idiopathic peripheral neuropathy and didn't even consider MS. I finally went to a peripheral neuropathy specialist to see if I could get a better explanation than "we don't know what's causing your problems." The PN neuro determined that my problem was in the CNS and started talking about MS, which is when I started scouring the internet for information and found this group. I read posts in many MS groups, but eventually joined only this one for the sense of community and the knowledge shared.

sho

[sg400]

Hello, all. I am still a dedicated lurker, though I very rarely post. (I guess I got kicked out due to inactivity - had to sign up again to post this.) I do not have a great deal of knowledge to share on this subject - I come here to benefit from yours. :)

D

[Buffy1970]

Buffy 1970 here.  In limbo land.  Joined last month to convince myself I don't have MS... that has not happened.  Mayo Clinic doctors are only ones who say possible MS (other than non-neuro local docs), but then Mayo neuro actually gave a full in-office test.  Everyone else says FM (I agree), migraine (maybe), nuts (possible but not reason for symptoms), and my fav... "you're just stressed out."  MRI lesions not 'typical' of MS.

Here's hoping docs are right (about not MS... not the nuts part).

[Tammy826]

Hello!! I am still here lurking around lol! I was diagnosed in August 2011- soon to start on copaxone so I am guessing dx of RRMS but I truely think I have one of the more progressive types but I will try the DMD anyway-I have been here since 2008 or 2009 can't remember. I was in limboland for 5 yrs but have had symptoms for 10 yrs. I am 42 yrs old from Kentucky

[NormanG22]

Hello all,

I'm Norman, I joined this month.

I was diagnosed in June of this year, after ignoring symptoms for probably 10+ years, I had an attack this past April that really kicked my rear and I had no choice but to seek medical attention.  

[vidalouise]

I am April. I was diagnosed about 10 years ago at the age of 22. I had symptoms for a decade before my diagnosis, but optic neuritis is what finally led to the MRI that showed classic MS lesions. I am also diagnosed with ehlers-danlos syndrome type III. I am currently in the process of starting on Gilenya.

[Deb61]

I've been here since '08.  I have found that this is the best forum for support and information.  I have posted on other forums, but are none that come close to this one.  

I was diagnosed in January or February of 2008 and started Copaxone March 2008.  I've had many years of symptoms which may have not all been MS related.  I have a complicated medical history because I have more than one autoimmune problem--including hypothyroidism and arthritis.  Because some symptoms didn't seem MS related, the doctors all thought that my problems were autoimmune related, so I saw only rheumatologists. Many of the odd-ball symptoms that didn't fit MS went away after starting Synthroid for hypothyroidism.  I still didn't feel well, but the symptoms that were left, were MS-like (looking back).  

When my sister was diagnosed with MS, I began thinking that I too could have MS.  I saw a neurologist, but didn't order a new MRI (I had an old one done on a weak MRI machine) which was negative.  My sister insisted I see her neurologist.  I did, and the second MRI showed lesions to my amazement.  Anyway, after the third MRI (second with this neuro), I had more lesions and growth other lesions I had.  I was diagnosed that very same day and started Copaxone.  

Copaxone is said to be failing me, which I'm sad about.  I have like not having the side effects.  However, I cannot have more lesions eating away at my brain.  I will be starting a new medicine soon (Rebif or Tysabri).  I won't know anything until next week.

Sorry so long.  Probably no one wants to read this (I probably woudn't), but if there's one person that's suffering out there that this could benefit, I guess it's okay.

Deb

[Jifr]

Hi there. Jifr here.  AKA Jen.  

I joined when I was looking for some info after getting my first 3T MRI.  Quix answered for me. :-)  I have brain, C & T spine lesions.

Dx April 2001. 8 months to diagnosis from my first attack (the entire right side of my body went numb).  I had attack after attack.  3 in all, at least, by the time I was diagnosed.

I've been on all the traditional DMDs.  I had my first dose of Gilenya in September of this year.  I have my fingers crossed that it will eventually get my MS under control again.  I've been having attack after attack or exacerbations and new symptoms every few months.

Let's see...everyone else gave demo info so:  I work in Insurance and live in Ohio with my Partner.  If I was a force of nature...people would probably say I'm fire.

Oh - and I'm a Taurus, too.  :-)  

[johnniebear]

  typo
should have read,

Until  I went to  a MS Neuro I didn't (HAVE)  any answers  ( UNTIL THEN)


sorry

[johnniebear]

WOW  I feel like  I'm on the MS  Hokey Pokey,


Early 50's, married,  two son's both are serving our Nation,  I have great dog Kouper

It all started in 2008,
I went to see a regular neuro for right eye pain & bloodshot eye,  she stated it wasn't normal and I had my first brain MRI,  it revealed two lesions on the brain and she said it normal and age related and don't worry about.

Fast forward a few years,  I  now have six brain lesion , on one MRI one of the lesion  enhanced  and two lesion on the  spine and delayed VEP.
No DMD'S yet,    I meet DIT, DIS.
  
Here's  where the The Hokey Pokey  begins,    
                      
                      
                     please sing along if you know the words

You  have MS and now you don't
You have RIS, now you don't have RIS,
you have probable MS, and now you don't
We think you had CIS and let's take that CIS back
thinking you need to  read up on  DMD'S and you will start  on them, and now you won't

And  that's how your MS works... and that's what it all about.


Until  I went to  a MS Neuro I didn't any answers, I  fired a few Dr along this path,   I think this November I will start  on DMD'S.  
I'm Keeping my finger crossed.  



take care
John

[Millsinc]

I am Tricia 31yrs. From the caribbean and been dx in Feb of 2010. Joined the forum in 2010 but went domaint for a while and rejoined earlier this year. I am taking the betaferon injections every other day and climbing the MS hill slowly but surely each day. I am so grateful for this community and the friends here as I sometimes feel alone not knowing anyone in my country or close with this disease. You all provide me with a wealth of info and I keep learning something new that helps me understand MS and its complications more and more.

Thank you and keep good all

~Mills~

[sllowe]

I'm here - and been so since 07. Found this site like many others -  I was   looking for sound information and I received it. I was dx'd quickly, and very much believed the doctors were wrong. Though I was aware that the sh it that hit the fan with my body, and mind, I thought I just had a stroke, and I was going to get better, or be left with limitations. Part of my thinking was right, hahah But, it wasn't a stroke. Spine and brain lesions, and positive LP later I was dx'd the same year.

I am happy to be apart of a community that give so much of themselves for the simple reason that they are passionate about others. I'm also grateful for those who are here to learn and be apart of others struggles  - makes things more bearable.

Grateful to be a part of your forum family :)
-Shell