I too have been diagnosed with chronic progressive MS recently. I just found this website and will keep searching for the answer that makes me feel better. I feel better reading your posts and feel my Docter has pointed me in the right direction.
Ten years ago, I couldn't walk because I suffered a severe MS attack that left me half paralyzed. I spent six months in recovery and therapy just to regain the ability to do everyday things like write with a pen or use a spoon to eat. I spent another year working hard to regain my mobility by practicing yoga and acupuncture. While I was recovering, I vowed to change my life. I adopted a healthy lifestyle and diet along with a strong will to overcome this disease. I decided that when I regained my ability to walk again, I was going to spend every day living my life to the fullest. Ten years ago, my life changed forever, and for the better.
It's been so wonderful finding resource/support groups like this. They also have some great podcasts at www.iwalkbecause.org (I like Lea's videos) and I hear they're looking for more great stories if any of you are interested in sharing. I'm thinking about doing it.
There is one way of self-testing that might aid you in knowing if your MS could be caused by Lyme disease. Someone with Lyme disease will most often get Jarisch-Herxheimer reactions when using antibiotics that are used to treat Lyme disease. Basically, if you happen to get on antibiotics and find that all of a sudden you are experiencing more joint and muscle aches and maybe some brain fog and just not feeling too well (minus hives and those types of reactions that would be allergic) you more than likely have Lyme Disease.
Some of the antibiotics prescribed for other ailments I had that caused this reaction were amoxicillin, doxycycline, bactrim and macrobid. So that's just four of them. There are others that will cause it as well. I know, however, that Cipro does not affect Lyme so you will feel just fine on Cipro. So next time you are on antibiotics, take notice if your joints start to hurt or burn and you get muscle aches and a general feeling of achiness. If you do, then you need to look into Lyme disease as the culprit.
Hello All,
I am in the wonderful world of LIMBOLAND! I was dx with TM but now because of those pescky brain lesions(15) and a ton of neurological weirdness from head to toe the neuro's thinking MS. Never in all my life did I ever think I would be dealing with any of this.It is very scary and frustrating .
It is nice to find people who are going through the same things mentally and physically.It's comforting....Take Care....
My husband was diagnosed with MS in 2003, He is a firefighter and when his symtoms started they hit hard, he was out of work for a year barely able to walk on his own. He has a great doctor and we beleive in the power of prayer. He has been back on the job now for 5 years. He does take copaxen injections everyday along with pain meds and Neurotin. THere are some days he is more tired then others and days where his feet are burning really bad but overall he is amazing. Our 27 year old son was diagnosed with a rare disease 2 years ago called Adrenoleukodystraphy. It has some similarites to MS but is a totally different disase. So as a family we are dealing with a lot of heath iissues its always good to meet and be able to talk to people who understand.
Hi! My name is Tina, I'm 40, and I'm here searching for answers to many of the health issues I'm having and have been having for decades.
This forum really seems to be full of such wonderful and caring people. I sure hope to meet some of you over coffee at our computers sometime. There is not one person in my circle of friends that is dealing with the same issues I am and it makes me feel as if I'm so alone. They do get tired of me canceling get-togethers and dropping out of clubs, etc... and don't understand how I can feel so great for awhile and then feel so bad, back and forth.
My dear husband is a sweety and is always here for me, but he can't say things like, "Oh, yes! I know how that feels!" or "You know, when I have that symptom, I do this or that and it really helps!" I'm hoping for just such connections here and I'm hoping maybe I can be a voice of support too in any way I can. :o)
I am an absolute believer that Lyme disease is a mimicker of MS. However, I am one who was tested for MS, but it turned out to be Lyme disease. Please know that the Lyme disease tests are currently under review because so many come up false negatives. I am CDC positive for Lyme but it took 1 1/2 years for that diagnosis to come. If you have tested for Lyme and come up negative, this does not mean you do not have Lyme. There are other ways of telling whether someone truly has MS or Lyme. One of those is that a Lyme patient will go through what is called a Herxheimer reaction when they take antibiotics that kill the Lyme bacteria. This means that when the spirochetal bacteria die from the antibiotics you actually get more severe joint pains and other symptoms because they believe the bacteria releases a toxin at that time. Keep this in mind next time you take penicillin, doxycycline or that line of antibiotics. If you get sick on those but aren't having your typical allergic reaction, you may be having a Herxheimer reaction which means Lyme, not MS.
Also on a SPECT scan of your brain, Lyme disease will show improvement after treatment with antibiotics. Ticks are also transmitting more than just Lyme disease now. They are transmitting other bacteria like Babesiosis, Ehrlichiosis, Bartonella, etc., so you may test negative for Lyme but you can still have one of these other infections that so many physicians are not testing for. Only a Lyme Literate Physician can properly diagnose and treat you for Lyme disease. ILADS.org is the best place to find information on Lyme disease.
Don't overlook Lyme disease. I think one day we are going to find out that many MS patients actually had Lyme disease. Alan MacDonald, a great pathologist who was studying Lyme disease found that 7 of 10 Alzheimer brains that he received from the Harvard brain bank had the bacteria Borrelia Burgdorferi, the Lyme disease bacteria. That's pretty compelling. It's worth looking into. Lyme disease causes serious and debilitating pain when it is untreated and it is fatal.
Welcome to the site. I have been a member for a while, but never make it on. I'm trying to get information about MS for my husband, But love this site, cause we meet new friends and get some answers we need we can find answers. Hope to have more time to be on site.
I am a 31 year old woman and half of my tongue is numb....not completly but enough that is it anyoning.
I saw my primary and she did some office exams...llike touch your nose then my finger...I wasnt able to touch her finger correctly with my right hand.... when standing completly still with my eyes close....I began to slowly lean over to the right side and I did not notice it until I was off balance.u know stuff like that and on the right side of my body is different then the other.
I feel like I have a extra layer of skin on the right side so although my right side is not numb it is different. My MD said that she doesnt think its bells palsy (which I had about 5 1/2 years ago) So I am a worried. She did mention aneruisum and MS. I am very worried.... I would perfer bells pasly over anything else. My MD has order an ekg, blood work, MRI for my head, neck and brain and an echocardiogram. Anything else you would recommend??
Please respond with your medical thoughts on what you think.
Hi, all. This is Heidi and I was recently diagnosed with MS, but it's suspected I've had it for a very long time.
All of my lesions are in the cervical spine only at C-4, 5, 6, and tiny ones at C-7. I have suffered in pain since reacting to Levaquin, a flouroquinolone antibiotic. I had L'hemittes sign since my early 20s, not knowing what it was. A physically stressful domestic event in 2004 set off spasms and pain in my trunk. After the levaquin event in 2007, every kind of tingling, burning, stabbing pain took over my right side. Symptoms contine worsening in 2009. Many doc visits and response to Gabapentin got me to a neurologists, where after months of tests and MRIs the MS-specialist neuro gave me a definite MS dx.
I will use this site to learn more about the condition. I have been given a 6 month reprieve on starting the modulators (although it was recommended I start ASAP), I swim 4-5x wk and am in great shape, but pain is a constant in my life. Thanks for all the insights here, esp on the MRI details. -h
Hi! My name is Martha and I got diagnosed with MS in 2006, it has gone from MS, to probable MS, to "I dont know what is wrong with you". I was feeling fine for about 2 years, but this summer all my symptoms came back with a vengance and frustration is now setting in. I am hoping to find a new neuro so I can get some definite answers and seriously considering going back on Copaxone.
Nice to know I am not alone out there!
I would like to you with you. I do not even that society sick in the SM is so numerous, very aug ciesze that here for you I. yet I do not know what and how it works. I will teach aug friend. wybaczcie errors.
Chciałbym się z Wami przywitać . Nie myślałem nawet ,że społeczeństwo chorych na SM jest tak liczne,Bardzo sie ciesze ,że tu do Was trafiłem .jeszcze nie wiem co i jak działa .Uczę sie poznaje .wybaczcie błędy.
HI ALL!!!!!!
FROM SAMMY ;)
Ditto to what Ren just posted. I'm sure I may have found somewhere else to turn when I started on this MS dx journey, but it probably wouldn't have been with a group of really caring, smart, and truly sincere fellow human beings whose only agenda was to help each other through all this. Thanks from me to you all as well. It is now our turn, the newbie MSers, to reach out and help other newbies that come along after us.
Luv you all,
Julie
Just wanted to pass on my sincere thanks for all the help and support you have given me. This is truly a special place filled with kind souls and intelligent people (not that they are mutally exclusive).
Everyone here "gets it' and knows how it feels to live in either Limboland or on the side of the diagnosed with MS. No matter which side you reside on, you will find compassionate caring people to help you through your journey.
With many thanks,
Ren
Once there was a reasonably happy person who lived among the good and happy times of a metropolis much akin to the Emerald City. Life was good and the residents were busy being oblivious to the dangers lurking, thanks to the smoke and mirrors of living in such an enchanted town.
One day a dark storm moved in and removed the shine off that happy world, leaving in its place tarnished harsh realities. Not wanting to be surrounded by the never ending reminders of the changes going on, the resident took off running.
Not so much a Forest Gump type of meandering run without a purpose, but rather like that fabled gingerbread child looking to escape bodily destruction. Run, run as fast as you can…. Oops there goes a leg. It’s still there but it certainly doesn’t work. Running is now out of the question.
Now gimping along, instead of running, the hopeful one asked everyone that was along the path for directions, but didn’t know to where . … “Where am I headed?” was repeated over and over. “How will I know when I don’t have further to go?” was another inquiry. Well intentioned acquaintances proposed solutions and hexes and balms and salves as answers. Strangers could only stare and then turn away, pretending to not notice. No one was able to provide answers; the less-than encouraged one moved on.
The journey continued down the path, which was littered with syringes, pill bottles and too many used alcohol wipes to count and the less-than -positive one kept moving along. Stops for rest were only possible when handed a card written with gibberish proclaiming a pause for another appointment- money due at each stop, paid for the privilege to move on to more unknowns.
Further along the path was a wall, which the shaken one slowly hoisted up on and proceeded to fall over the far side, thanks to a growing problem with vertigo. More damages accumulated to the weary body. Horsemen from the nearby kingdom passed by but only shook their heads, knowing full well they couldn’t put the broken pieces back together again. Shattered but still full of spirit, the damaged one pushed on.
Looking around proved to be a dilemma because the diminished one’s vision had deteriorated, and everything was blurry and seen in multiples. Blindly the frightened one veered off the beaten path and discovered that it dead ended into the deepest of forests, dark as night, and filled with more scary things than can be imagined. The fertile imagination takes over, and turns the scene into a nightmare, all the possible outcomes playing over and over until becoming almost concrete in form. The darkness of the imagination let loose to run amuck overshadows the real darkness of the forest.
Staggering now, just ahead is a sight that was difficult to comprehend. A spectacular refuge, clearly marked and sitting alone, is calling out like a siren for wayward sailors. Edging closer, it becomes clear that this place is meant to be a safe haven; the initials MH are carved into the gates protecting the abode. The encouraged one immediately thinks “My Home, this is now My Haven.”
Entering through the main door, the astonished one is immediately joined by others already assembled inside. And this is their greeting: Welcome - come share your thoughts, your fears, your wishes, your dreams. We all have them. Welcome to MedHelp.
Be well, be happy-
Laura/Lulu
i started here a couple of weeks ago and am finally getting to introduce myself. i hope you all forgive me. i came here looking for support and understanding with this horrible illness. was in another group and support was just on the title.
i guess i should start...i'm dee, 33 years old, married, with two wonderful boys 11 and 8. my youngest is mildly autistic with adhd and my oldest is a sports nut. which means loads of fun for me. i was dx on dec. 27, 2005, one week before my 30th birthday. merry christmas and happy birthday to me!!
i did the right thing for about a year in taking my shot and my occasional meds. then everything went into remission and i went into denial. two monthes ago i got a shot out of denial with a major relapse. so no more denial for me.
Hello,
I just joined today and I hope to visit often. I Just found this site and will read it often. Good wishes to everyone here.
Hi Everyone,
Thought after all the help I have had recently that I should add my welcome too as I like to think I am now 'officially' a member of this great community and even found the guts to update my profile and add a picture so I am here to stay for now!
What an amazing place - I am adddicted to checking out every day the discussions and the chats by others here and I've been made to feel so welcome from day one. If you find this place by chance, as I did, then you have found a home form home where people understand in a way that only those with a probable / possible / definite MS dx can do.
I may not add a lot to discussions as my job is quite demanding and has long hours and tiredness often dictates I go straight to bed when I get home - but all the same I am so glad to be here and happy to help others whenever I can.
Bless you all
Love
Pat x
I was searching the 'net at "Oh-my-God-o-clock" in the mornin' last nite...(or this
mornin'...whatever)...for: "Cervical, Bulging Discs"...and ran across this website
in the top 3 entries of my search results...
I thought...How interesting...I have MS...I have bulging between C-5 to C-6 and
C-6 to C-7 vertebrae...THIS might be an interesting site...so...again...HELLO!!!
Yesterday I went for my Tysabri infusion #15...woo-hoo...went very well as usual...
after almost 2 years of the at-home-do-it-yourself Avonex injections my neurologist noticed
my progress had sort of reached a “plateau” I guess would be a good word…my condition was
NOT really progressively worsening…but it had sort of “stalled” and was not really making any
great strides in the area of improvement either…hhmmmmmm….what to do???
I asked him…OK…What is the next “BIG-GUN in the cabinet”…what we got?…what are my options?…I’m ready…lets kick the sucker’s a$$…at which point he said…I’m glad to see you
are so “pro-active”…
Let me back up for a sec…I was DX’d…I mean finally DX’d… in April 2006 by a GREAT MAN!
This was after MY MS presented in March 2006 for “no” apparent reason really…nothin’ dramatic happened…no car crash…no “incident”…just a 102* fever and my last 2 college finals I had to
pass to get my degree…ugh…
Oh…and yes…I passed…and received my degree…Magna *** Laude, with Honors…thank you very much...(applause here)….
From March to April of 2006 I really cannot remember anything at all.
In-and-out of the ER…I have medical records of the whole mess that show I think 4 or 5 LP’s,
countless MRI’s, blood work up the woo-hoo, you get the idea…
I was questioned and tested for everything from HIV/AIDS to Lyme disease, asked when and where
and for how long I had been out of the country…IT WAS MAKING EVERYONE NUTS!!!
Especially ALL the Doctors and Specialists…
Anyway…after finding a great neurologist and receiving the correct DX…we started on a VERY
aggressive treatment program that included 6 months of Chemotherapy, corticosteroids, and Avonex.
Glad to be here...
Hi to all the newcomers, those who are lurking, and my wonderful friends here!
I've been reluctant to add my welcome until I had a diagnosis, and then I realized that I was a permanent part of this community no matter what, so I'd better put my welcome on here for everyone that's coming in!
If you are new on the forum, you've come to the right place... you will find support, laughter, smiles, patience, encouragement, true friendship, hope, answers, peace,and much more here. Hang out with us for a while.... check in every day, read the posts, invest in folks lives, get to know us, and we will in turn get to know you and be there for you when you are in need of a hand, a hug, and human being to laugh with, or to cry with.
As fare as me personally, I'm currently seeking treatment at NYU, and am going through the testing process and am in that end phase of limbo land. Things are moving fast... and we are hoping for answers, and yet I do not know what tomorrow may bring. I've had symptoms since I was about 17 or 18, and they have just went downhill this summer (when I was 20).
I'm here as a listening ear, a sunny smile, and a cheery heart for those who need it!
Smiles!!!!
~Sunnytoday~
Welcome to the MS forum. I know that whether you're waiting for a diagnosis, have had MS for twenty years, or you're a caregiver needing support or info -- you've come to the right place.
There are so many people here that will do their very best to help you or just read and respond if you need to vent.
My personal experience is pretty varied and I like to share my experiences with the many treatments I've done during my nine years since diagnosis. Feel free to look at my profile and check out what MS drugs you might have a question about and PM me if you'd like. I'm pretty sure if it's out there - I've tried it! I certainly won't tell you what is right for you, but I can tell you what's worked for me and general information about my experiences.
There are also many kind, helpful, and patient people that will help you find the information you're looking for (I'm always asking) if you're having a hard time finding things yourself. There's a wealth of information on just about every symptom, treatment, and feeling that goes along with the process of living with MS.
LOVE & LIGHT FRIENDS!!!!
DEBRA/FUNMONKEYTOES
A big warm welcome to my favorite forum and Cyber Family! I am sure you will find what I have in the people who visit here, a shoulder to cry on, an ear to listen and a ton of great advice on how to deal in a world of uncertainty.
I am presently a Limbolander but am hoping to graduate to having a real diagnosis some day soon. Again, nice to have you here!!
Kristin
Welcome to the MS forum, my home away from home! I have been a member since 2007, and I have found many new friends here who truly understand and are very supportive in so many ways.
My DX is ADEM, one of the MS mimics, but I have had repeat MRI's every six months to watch for possible MS. This group has been so helpful and informative and a great source of strength for me!
~Santana~