I'm 29 years old and was diagnosed about a month ago. Last December the entire right side of my face started twitching uncontrollably. I soon realized the twitch was constant and wasn't even stopping when I was asleep. I went to my general doctor, tried a few things that didn't work, got an MRI, got recommended to a neurologist a week later, he suspected MS because of the apparent lesions, but was curious about my symptom. Out of the 1,000 MS patients he's had in his practicing years, he's never met one who presented with a twitchy face...ha ha ha. Hey, when I show up, I show up in style.
Anyway, waited 6 months, got another MRI, had one more pesky little lesion, and now we have our diagnosis. My face stopped twitching about 4 months ago, and so far I haven't had any new symptoms. I'm set to start the Laquinomod (sp?) trial mid-September if I qualify.
I feel pretty lucky thus far, quick medical responses, pretty light symptom, quick diagnosis, potential pill on the treatment front. Also the hospital pipes my iPod music into the MRI for me. I think that's standard, but I've never had an MRI before this past year so to me that's pretty awesome.
First of all, I ALMOST named my daughter exactly the same thing. I have 14 year old twin girls, Katy and Ally, but I wanted Katy and Kacy. I was outvoted dangit.
Second, my most recent MS flare sounds similar to yours! (Just so you don't feel alone). I was diagnosed in August/September of this year after an incident in July... first my lips started tingling and twicthing, then my eye, then my ear drum... the muscles on that side of my face started twisting upward, making it look like half my face was smiling. It was very weird looking. :) The good news was MS to me because I figured I had a brain tumor pressing on my facial nerve.
Anyway, nice to know someone has been through the same. :)
Hi, I just turned 68 & was recently diagnosed although I've had symptoms for at leat 10 yrs. Was told I had neuropathy & spinal problems. Numerous MRIs & my current neurologist said he couldn't believe no one indicated MS before. So I understand how you feel when you say you're relieved.
Thank you, gi44.
I'm 66 and waiting for my MRI results. I've been having balance problems for years and, apparently, have cerebellar symtpoms that my GP told me are most likely "a stroke, a tumor, or MS".
Yikes. Frankly, that made MS look pretty good to me :-)
May I ask if you had any eye symptoms? I do not, just balance/gait problems, some tingling, and some fatigue. As it relates to fatigue, I'm not sleepy during the day, but I usually have to lie down for a couple of hours every day.
I'm still struggling to believe I could get MS at my age (note: I do not have a diagnosis yet) but it's very helpful to read about the experience of others my age.
I was diagnosed at age 37, my first symptom started in 1998, my left leg went numb and I thought it was damage from years and years of sports. That lasted about 1 yr. Then the following year it went numb again. I went to a Dr. and they said it was nothing and I went on with my life. in 2011 I woke up with no vision in my right eye. I went to our local Walmart optical Dr. and he said I had optic neuritis and got me an appt. with a Neuro Opthamologist. The Neuro said we'll do a Mri and see whats going on.. I had several lesions and he said next we will do a mri of the spine and a lumbar puncture. At that point I asked what was going on to have a LP and thats the first time anyone ever suggested that it might be MS... LP came back with 9 Olig. bandings and my mri of spine showed lesions and a syrnix on my spine. Which was syringomyelia a different disabling condition. Anyway after a few evoke potentials they said it was RRMS and SM. I have now been on Avonex for 6 months and have had solumedrol infusions to help with vision. Nothing can be done about the syrnix because of where it is.
I was diagnosed yesterday. Needless to say, I am currently scared and confused. Trying to figure it all out.
I am 28, female. It started about a month ago. My feet went tingly, then it went up. I could feel it in my side, one arm, and the pinky and ring finger on both hands. First I went to urgent care, I was told to get insoles and take a couple days off from work. Still persisted, got myself a doctor. She did blood tests and told me to go see a neurologist. Blood tests negative, waiting till I can see the neurologist...my feet came back online, and for the most part so did my legs. I had a day of close to normal, then my fingers started to hurt and then it spread to annoying most of my other fingers. Now they feel extremely stiff and tingly, but i can still move them. Its weird because Im not really feeling them. My arms are both numbish now, starting to feel heavy...and then the MS hug is there. Along weith feeling missing in my upper back.
The lesions are currently in my brain and spinal column near the neck. On monday I start steroids. I go in 3 days in a row for 2 hours. He may also do the spinal tap for good measure. After this is over, we will be discussing medicine etc, but we arent there yet.
No one in my family has ever had MS. I had a great aunt who had ALS, which I found out from my dad after my appointment yesterday. I guess I should be greatful that I dont have a brain tumor or ALS, but its still frightening and a lot to take in.
I was, well, AM, 25. I was diagnosed a little over two weeks ago. Starting last year, I was having odd symptoms . . . trouble writing for about a week, then an episode of Bell's palsy, a year of nothing . . . then in February I started getting migraines out of nowhere. They were accompanied by severe vertigo, nausea, and intense vomiting. On 3/14 I woke up and was walking like I was drunk! I went to the doctor for my appointment and he sent me to the ER - spent six days in the hospital and came out pumped full of steroids and diagnosed with RRMS.
Hi! You're one of the few people that have posted the same symptoms that I get during an intense attack: the "migraines out of nowhere... Severe vertigo, nausea and intense vomiting". There are others who present this way, but this is less common and threw my rheumatologist for a loop. Keep sharing, you never know when a post will be a huge help to someone else!
I was diagnosed at 60, also after 15 years of many different issues. Some I didnot seek help for because I thought it was accident related. But when the floor became a magnet to my head , I got serious and pushed myself. Got aMRI had leisons, but DR's then said I was too old for MS after appx 4 years I found a MS specialist and I am now being treated. DR said I was too old for MS. Anyone else hear that?
54 now just had a nuro tell me I am too for ms must be mini strokes ????
I was looking for people diagnosed at my age. 62, diagnosed last week. For 3 years tryinig to figure out: numb feet & lower leg, and major itching and balance issues at times. Not until I went blind in one eye, was it diagnosed (3+ weeks later). What a shock - all of the symptoms seemed like nothing, until the eye - I've probably had RRMS for much longer, but still walk fine, so I've been very fortunate, Weighing options for treatment: CAM/conventional.
I was told too old for treatment.
I am now 70. I’ve had problems since age 22 when I started having seizures. I had an EEG and no Epilepsy. Started falling when pregnant at 31. Vision problems in my 30s. Went to an Optometrist and he diagnosed my problem as weak eyes and had me do eye exercises. My internist said my back spasms and stomach spasms were because I was depressed and gave me muscle relaxers. Long story short I am now in a w/c after multiple falls. No diagnosis except Upper Motor Neuron problem.
I just found out 2 months ago I have MS and like you I felt releaved I havent got depressed or upset yet but, I am sure soon it will all really hit me, I am also on Copaxone and it has helped but not doing good with the shots. I also had lots of bowel problems and bladder problems where the doctors just keep telling you more fiber and I just could never go, but just glad to know why everything has been shutting down. Just trying to stay positive, and enjoy my kids, and family. Being older and diagnosed later just was these doctors all the systems always lead to other things before they suggest MS, so people are wondering for years whats really wrong with them.
I was diagnosed 3 months ago at age 56. I had symptoms for just 3 months prior to the diagnosis. I had always been pretty healthy, so I was shocked ... I am learning everything I need to know, and trying to prepare for an uncertain future.
I think that a positive attitude helps immensely as does diet, exercise, and for me, the addition of acupuncture, chiropractic care, and a caring counselor to help me get through the hills and valleys.
I live with a very understanding, loving and caring man who is helping me all along the way. So I am very lucky. My grown children are frightened, but I send them bits of information to read and digest when they are ready.
Good luck on your path my friend!
I was 24 and working at nights at Wal-Mart. Woke up before my shift and my left side was totally numb. Thought I had a stroke, after 3 weeks and a BUT-LOAD of tests they said I had M.S.
I was 48 when I was dxd.
I am 45. Dx given: "Well,_____(physical therapist) wrote in his 2nd assessment basically what he wrote in his 1st assessment, he thinks it's MS. And, I think so too, thought so the 1st time I met you." THese words were said to my after my 2nd office visit. Now that I have an MRI with "numerous lesions in the white mattter....3mm.....4mm.....corpus callosum....pertivetrivular......too much to write. So - no 'OFFICIAL" dx from a neurologist. Maybe it isn't. Maybe it's something else. I trust my physical therapist - and his professional and personal experience related to MS. But, I will say that rarelh have my symptom clusters presented normally. Ex: sinus infections are atypical. Not to mention other major health issues. So - I'm 45.
Husband diagnosed in Jan at age 43. Possible 1st problems happened at 17. No other incidents possible numbness thought it was a pulled back muscle or nerve. 2009 increases with headaches and numbness thought this was due to stress at work. 1st fall happened in fall of 2011. Summer 2012 with yet another lay off triggered obvious gait problems. Going on copaxone. Praying this stops for another 30 years.
Some families share there lives and know just about everything that each other does, mine is not that way. We are all very accustomed to bad news or misfortune, so if something is going wrong in your life you keep it to yourself because you know that no one else has any extra energy to care. Also, we are all sort of in and unintentional battle of "Who has the thickest skin". So the fact that I haven't felt well is not something I have shared with my loved ones. Unless it is hospital worthy, we just keep it to ourselves.
I'm having trouble typing right now because my left arm feels like it weighs 100 pounds and tying to hold my hand on the keys induces a downward pulling sensation in my left hand. This is just one of the many odd things that have become normal in my day to day. In fact, there is a long list of things that have became normal over the last 2 years, most of which I've just learned to ignore or work around. It has only been in the last two weeks that I've had such a hard time with my left arm that I've actually looked to family and doctors for help.
I'm not the picture of health by any means, mainly because I drink too much caffeine and smoke a half a pack a day. But I am at my ideal weight and until recently was know to be something of a human ant (being able to lift more than my body weight without much effort). I hardly drink and don't do drugs. I am a vegetarian and I don't eat excess salt or sugar. I have generally been a ball of too much energy for most of my life. I sit down very little and am more likely to be found doing handsprings or headstands, than sitting in a lawn chair. But something has changed. I finally made a full list of things that have started in the last 2 years that I, in hindsight, probably shouldn't have ignored for so long. I really just thought this is what it felt like to get "Old". Hence the downside of not talking with many others my age, because now they tell me I shouldn't feel at all "old" at 31. I'm quite private about things so its not easy for me to actually admit some of these things to others, so be gentle.
Heaviness in left shoulder
Numbness left arm and hand
Left ring finger twitches nonstop
Extreme muscle weakness all over
Bouts of all over itching, lasting 45 minutes to 2 hours
Forgetfulness (doc appointments, work assignments, why i went to the store)
Increasingly frequent episodes of saying the wrong word.
Rolling headaches on right side of my head
Inability to carry my 30lb son for more than a few minutes. He feels like he weighs more than me.
Trouble waking up in the morning, actually being late. Not common for me.
Trouble concentrating, more than my lifelong ADHD has ever done.
Decreased sexual desire
Feeling like parts of my body are moving when they aren't
Twitching in left eye, comes and goes fast
Flashing lights sensation when I close my eyes
Eyes are extremely photosensitive
Charlie horses in my legs daily
Limbs regularly get the feeling that they have "fell asleep" several times a day, moves from one part to another.
Dead feeling in left calf and left foot for 2 years
Waking up at night and arms and legs feel dead have to sit up and move them around because every sleeping position feels uncomfortable
Weight gain because I don't have the energy to get up and move around.
Hot flashes even though I'm always cold.
Episodes of chest pain/tightening and feeling like I cant catch my breath, lasts about 10 minutes
Getting too hot when i'm outside even though I have never felt even Louisiana heat uncomfortable
Feeling old and worn out pretty much all the time.
I've went to several docs now and when it all comes together they all say it sounds about the same, but even if I just want these things to go away or be explained, I really don't want to jump on a diagnosis. One big issue is even trying to confirm a diagnosis. I'm also trying to will it all away and telling myself I cam internalizing all of it and its all in my head. Because I don't have a confirmed diagnosis, I'm not going to say its Muscular Sclerosis. I'd like to hear from other women who can say they had some or a lot of these issues and what they eventually concluded with their doc's. Thanks for any help.