Hi, Could We All Introduce Ourselves on this thread?

[MsWillow]

Hi everybody. I've been reading here for a month or so, but haven't yet (that I remember) introduced myself. I'm Jeannette. 44 years old, I grew up around Detroit and Chicago, now living in Seattle. I've got SPMS - my first major attack was in 1994, and I never really recovered from that for about 6 years, while various doctors diddled around mis-diagnosing me the whole time.

I was in the Avonex trial for SPMS a while back - thankfully, I was on the placebo for 2 years, because when I started the real thing, I was immediately, actively suicidal. Nowadays, I'm not really "on" anything, though I do take steroids when I have another flare-up.

I'm semi-ambulatory. I can hobble, for a few steps. Mostly, I putter around in Elspeth, my electric wheelchair. I sleep a lot, read, cut gems and tinker with making jewelry, and pet my four kitties.

I'm trying to hold on to what functionality I have left, waiting for something to stop this totally, then re-myelinate my nerves so I can have a life again (Not that I ever had one before, as a software engineer, but still, I can dream, no?)

[Debie]

My name is Debie, 46yrs old, and just dx with rrms. My neuro believes I have probably had this for many years but just got all the dots connected.
Have been married 27 years with 3 stepsons(35,33,29) and 1 daughter(26) and one son(18) two grandbabies(4 & 2). I'm glad I found this site! I really need to talk to other MSers. My dad had MS and his sister has it too, and as far as I know, I am the first in my generation to be dx with it. I have so many emotions rolling thru me, part of me just wants to cry and the other part won't let me! Does that make sense? My husband and kids, mom and siblings are trying to be there for me and I know their hearts are in the right place but it seems like pity and I don't want that. I think what I need is someone to talk to....thanks for letting me vent!
Debie

[Shayk]

Debbie

Welcome to This is MS! I was diagnosed last fall at age 57 (No kids or grandkids) and have found this as a "newbie" to MS to be a great site.

To be honest I think I'm still in some shock and denial, but trying to move ahead and stay as healthy as possible.

I find exercise to be one of the most helpful things I do, but with grandkids you may not need any exercise.

Do take care and as others say, read all you can. Have you decided on medication yet? That's one of the first "hurdles"

Sharon

[fightingms]

Welcome Jeannette, and Debbie. Glad to have you on board. Debbie, give yourself some time girl....this is a very roller coster type time in your life. Allow yourself to cry...and be mad...and deny...and everything you are feeling....and know that it is all NORMAL!!

We have all been where you are. I was DX in 99 and I am still waiting for the call to tell me they made a mistake.

With MS in your family, I am sure you know allot about it, but researching it has a whole new meaning when you read symptoms that you are actually experiencing. Read... read...Read all you can, I think the more I learned about MS after being DX the better able I was to handle it.

Jeannette...I am so glad you found our group. I look forward to reading your posts.

Take care....Kim

[chrisf]

Hi, my name is Chris and I was diagnosed with RRMS in September of 1992. I'm a 39 year-old male who has always had invisible symptoms (except to me). Went through a long stretch (almost 10 years) without exacerbations, and due to some major stress levels over the past 6 months have had a couple of scary ones; getting my confidence back with a course of Prednisone and by lowering my anxiety level. Primary symptoms are numbness in the legs, shaky knees and ankles, and some bladder hesitancy. Took Betaseron for 12 years, and had good results with it. Switched to Avonex a year and a half ago. Aggressively pursuing LDN. I'm convinced that for me, stress and anxiety are the primary triggers of my exacerbations. Confident that I will heal back to the level where my MS is merely an annoyance with full functionality.

[Shayk]

Welcome Chris

Love your positive attitude. I'm a "native" Oregonian believe it or not so always happy to encounter people from there.

There is a lot of info at this site about LDN and how to get it, so hopefully you'll meet with some early success.

Glad you're a member. I'm relatively new to MS, but love this site.

Sharon

[great]

I have been reading here some time now, and I do like the kind of more analytic discussion that goes on. I think the mystery of MS goes largely unsolved, and I should like to hear (and possibly express) different ideas and opinions about all the fuss (and business) that is going on around it.

Introduction to my MS: first symptoms 30 years ago, diagnosis in 1998, RR, possibly turning into SP. Most disabling thing is cognitive impairment. I am 53 yrs, have two grown-up daughters and a husband. I am a Finn, but live some months every year somewhere else in Europe, mainly in Great Britain.

Before being only ms, I worked as a company director in a multinational group of (small) companies. I still miss my work, but am gradually getting used to being useless.

[wilson]

Hiya

My name is Tim, 41 and I live in the MS belt, Colorado. I read somewhare that Colorado on average has five times more MS dx than the east coast. Lucky us!

I had my first attack in January of this year. I woke up with severe numbness on my right side. "Uh oh!" After a few days and multiple tests at the hospital, an MRI showed multiple lesions. So, my diagnosis was rather simple. Since my first atttack, I have gain about 75% of my strength and mobility back. I am hoping for the rest of 25%.

I take Avenox and go to the gym for exercise regularly. I have to say that my diet is rather poor, but hey! I am bachelor. It is supposed to be that way, right?

My dog, Wilson has been a great "security" blanket. Since the dx, I allow him to sleep in my bed. He such a great dog and is very happy at the foot of the bed. Someday, I am hoping to better... , but for now, it is nice to know he is there.

Cheers

[Tammy]

Hi, I was diagnosed in feb of 2004. This web site is great! Mine started with waking up one day and my right side was numb. Since my recovery I have regained most of my strength till last week. I am now having numbness in my right side again. Do I wait this out? or go to my docter. Thanks for all of your encouraging words, as I read through this site I know that god is with all of us .

[sketchy]

Hi all, I'm not sure how I came upon this site, but it looks good, big thanks to the admin. I have a pretty strong dislike for pharmaceutical companies, so it's great to find a neutral site - somewhere to share MS experiences with people that understand, and who aren't trying to sell you something.

I'm 35 with a beautiful girlfriend I've been with for 10 years (we went to Uni together), no dogs or kids - I'm working on the dog. I'm profoundly grateful to have a loving and supportive family. I work from home as a computer animator. I consider myself lucky, as my symptoms are generally so mild I can still go Rock Climbing a few times a week, and hit the beach every day during summer.

I was diagnosed with PRMS between Christmas and New Years 2000. Hey, that was a good thing - the first doctor thought I had a brain tumour... I was pretty unimpressed with the symptoms, just gammy legs and hand. My main concern was that I sucked at Half Life with my left hand out of action. I wasn't taken with any of the available treatments (I hate, hate, hate, needles), so I decided to pass on that for the time being. It took around 10 weeks to chill out totally.

I had a good flare up in 2002, just as I was on the way to Nepal. I had an Enfield motorbike organised over there for touring the country. Great experience, but I can assure you that kick starting an Enfield when both your legs are weak and numb isn't the way to look like a cool biker - half the time you end up in the mud a heavy bike on top or you. The bright side being you couldn't feel the bike Oh, that and the fact that the only brake that worked was the rear brake (controlled by one of my numb feet) made it a bit more of an exciting month than I'd counted on.

I've gained a lot from MS. It's made me really consider what is important to me. That's probably easy for me since so far my symptoms have been pretty trivial, more annoying than debilitating. But it motivated me to quit a job that sucked, start meditating again, and start writing. All of which have greatly enriched my life.

I'm going to keep avoiding the medicines for now, and have just started on a diet loosely based on Swank (Nooo, what about pizza and ice cream...) I'll see how it goes from there.

Best wishes to all, and looking forward to see how things go here.

[MONA]

I'M NEW TO THIS FORUM STUFF. I TOO AM GLAD TO FIND A SITE NOT PAID FOR BY DRUG COMPANIES, I'M TIRED OF NOT HEARING BOTH SIDES.

I WAS DIAGNOSED WITH MS IN 1999, BY A NEURO THAT NEW VIRTUALLY NOTHING ABOUT MS BUT TO PUT YOU ON AVONEX. EECH! 9 MONTH LATER, HEADACHES, DIARREAH AND HIVES I FINALLY QUIT THE AVONEX AND ALL NEUROS.

THEN LAST YEAR WHEN THE FATIGUE HAD GOTTEN SO BAD I COULDN'T STAND IT , I WENT TO A NEURO THAT SPECIALIZES IN MS, WE FINALLY AQUIRED ONE IN OKLAHOMA. HE OF COURSE WANTED ME ON MEDS, HIS FAV FOR ME WAS BETASERON, PROMISING SMALL INDIVIDUALIZED DOSES WITH VIRTUALLY NO SIDE EFFECTS. HA! WELL I AGREED TO A 6 MONTH MRI TO MEASURE LESION GROWTH. THE 6 MONTH MRI SHOWED AN INCREASE IN LESIONS, BUT MOST OF THE LITTLE STUPID SYMPTOMS THEY TRACK WERE BETTER. THE NEURO DIDN'T KNOW WHAT TO TELL ME. HE STILL SUGGESTED MEDS, BUT WOULDN'T' PUSH ME INTO IT. RIGHT NOW I JUST WANT TO FEEL GOOD, WHICH IN THE LAST 6 MONTHS SINCE I GOT ON AN ANTIDEPRESSANT, PRACTICING YOGA, AND REGULATING ACTIVITIES (DON'T GO OUT ON A SCHOOL NIGHT) I'VE FELT. I HAVEN'T TOTALLY DISMISSED THE POSSIBILITIES OF THE "CRABS" BUT FOR NOW I JUST WANT TO WAIT FOR BETTER DRUGS WITH LESS SIDE EFFECTS. MY SYMPTOMS JUST AREN'T SERIOUS ENOUGH YET TO SUFFER THE CONSEQUENCES.

[LaRoy]

Hi everyone,

I don't know how this is going to appear, as I am just trying out the font codes, etc. for the first time.

My name is LaRoy, and I am a 60 year old male with SPMS. My earliest known symptoms go back over 22 years and I was RRMS until 2000. I was finally diagnosed in December, 2000, and by then had morphed to Secondary Progressive.

I live in Western Montana (God's country) and am a painting contractor here. I have a crew of painters, and though I can no longer do the physical labor, I take care of bidding, bookkeeping, supervising, and go-fering.

I am also a co-leader for our local Bitter Root Valley MS Support Group, and enjoy the interaction I have with the other members. We aren't much for sitting around crying in our beer about our plight.

I have the normal range of symptoms: numbness, tingling, very weak legs, loss of balance, bladder and bowel issues, fatigue, heat sensitivity, etc. I get around most of the time on forearm crutches, but use a wheelchair if I have to go very far, or am extremely fatigued.

I found out in January of this year that I have extremely high levels of toxic mercury in my system, and have been undergoing chelation therapy to remove it. In three months, the levels have been reduced about 40%, and I have begun regaining feeling sensation in my feet, legs and arms. Since mercury poisoning symptoms and MS symptoms are so similar, I wonder if there might be a direct connection?

I was pleased to find this board as I am really discouraged regarding the mainstream medical community's commitment to finding the cause(s) of MS. I am pretty convinced their motivation is monetarily driven and that a lot of possibilities are overlooked because there is no money to be made from them.

I have an abiding faith in my Lord, Christ, and believe as is promised in the Bible, that I shall again one day run and not get tired, walk and not become weary.

God bless you all,
LaRoy

[epfcat]

Hi,

I was diagnosed seven years ago with the monster, and I wish this site had been around then!

I'm single, scared to get to close to someone because the guy I was with left me a year into my diagnosis. Now I don't tell anyone unless I absolutly have to.

I've been responding well to the drug therapy but it's still very scary sometimes, living with this. I'm glad to find this place.

[Guest]

Hi,

I was diagnosed seven years ago with the monster, and I wish this site had been around then!

I'm single, scared to get to close to someone because the guy I was with left me a year into my diagnosis. Now I don't tell anyone unless I absolutly have to.

I've been responding well to the drug therapy but it's still very scary sometimes, living with this. I'm glad to find this place.

[deehammer]

Hi all. My name is Dena and I am new to the sight and MS. I was DX in 2000. R/R. I have 3 girls, 2 stepsons, a new husband, an ex-husband,and a chinchilla. I couldn't believe my eyes when I saw how many of us are really out there! For a orphan disease it's an awfoul lot isn't it ? Hmmmmmm. Well, it's nice to meet you all.