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Readers Respond: Which Symptom Led to Your MS Diagnosis?

Responses: 290

By

Updated December 04, 2008

Not Diagnosed yet - retired RN

I took years to have my Fibromyalgia diagnosed and 15 yrs. later, I wonder if it has been MS all along or if I have just lately been struck by MS. I have already had two abnormal nerve tests to my hands showing bilateral carpalal tunnel disease, but those symptoms come and go - also, I haven't been doing anything to stress a carpal tunnel problem. Earlier this summer I went to step forward and I and my upper body went forward, but my legs failed to follow. (thank heavens for a fanny pack and a little belly pooch to soften the blow!). I've also had some problems a few years ago when my husband and I were on a jeep ride and when I had to step out my legs collapsed. I hadn't connected the two before this, but now I wonder. I've also had double vision and just lately have had severe neck stiffness (2 wk. duration). So I'm off to see my doc to see if I can get a limbar puncture done without going through all the other expensive tests! My hubby and I are both disabled. Thank you all so much
—AmyLuB

which syptoms lead to my ms diagnosis

Im 29 Yrs old, my fist attack was in feb 2009, all of a sudden i stared to see double.. when to eye DR ,no help, after a week or not knowing what i have when to neuro, did MRI came out fine ,DR send me home to recover in my own..by end of april my double vision was gone.. on memorial day 2010, i stared to experince numbness in the lower right side of my face and mouth..when back yo NEURO this time i saw a different one.. after MRI shows 3X more lession on my brain than the one i have done on 2009 .. my DR say MS ..That day was worse day of my life!! my Dr. put in solu-medrol intravenous for 1wk alot of side effect but it did help to recover faster..Im on Extavia injections now, every other day ,still having,fatigue,numness that comes and go ,vibrations from my knee down in both legs,and muscle back pain, facial muscle tighten up ect..My Advise to those with MS ,keep praying, be positive ,keep active!! FYI- what gets me out of bed every day is ,there is worse people out there!!
—linnettec

4 weeks to see neurologist

Hi I am hoping to get a hint of my condition here while waiting to see neurologist. Over past 3 years my only complaint is above right eye. Started as light twitch, went to severe twitch, went to more like a rythmic contortion. This then transitioned to mild/moderate ache inside the skull area behind my eyebrow. This is accompanied by completely random split second random stabbing pains from what feels like the top of the eye to the area inside my head behind brow. Also, the stabbing pains go up into my head what feels like vertical toward the top of the head, and some a little bit angled more toward the top of the back part of the head. The pain on the top of the eyeball is very brief but very intense. The twitching has disappeared but replaced by the pain. I don't know if this sounds like MS but thought give it a shot while waiting to see a dr.. Thanks.
—cliffpov

My story

Early march 2010 I started feeling like I was in a dream state. The day before memorial day. I woke up experiencing extreme vertigo. Over the next week it would ease up some but never go away. I finally went to my Dr. and he diagnosed me with benign positional vertigo. He prescribed meclizine, but of course that did nothing but make me sleepy. The Doctor's office called me a few days later and had me come back b/c my blood tests showed that I had an elevated white blood cell count. He gave me Augmentin and Prednisone. I finished both of the meds and of course didn't really feel any better. A few more weeks went by and my symptoms got even worse. I started having spasms on the left side of my body and could not talk during these spasms. Doctor sent me to hospital where over the course of 6 days I was tested for everything. Finally, Drs. diagnosed MS.
—Guest Linda

so many signs...not diagnosed yet

Hello, I am 39yo F, I have vision problems started wearing glasses at 33 and my eyes started involuntarily moving from the right to the left like I am rolling my eyes at the time I thought strange but being in the Army...I kept going, the next thing is that I had an episode of vertigo and was told it was BPPV, some DR. shined a light in my eyes, and I guess they reacted I was very confused, I knew my head wasn't right and it scared me, I vomited, it took almost 30 days for me to start thinking right, and speaking right, it was like I had to learn to type again.(they said no stroke I am now having these really wierd neck spasms daily, I try to describe it like a doll that you can turn its head with like a click click click motion to the left or right. a new symptom is that I feel like I have to pee alot, but when I go to the bathroom, either I pee a little or not at all, my left leg has spasms, my hands shake sometimes, I woke up drenched in sweat for a week, clothes also soaked. help
—michellek71

i wish i had an answer im only 22

my story is quite similar to kerys i actually doctors have been working really hard to help me but everywhere we turn theres no answer.i am female and have barely any estrogen.i have abnormal male hormones. ive been tested for tumors, cancer,cush,ais, but cant find anything. ive also lost 70 lbs in 3 months.my brain.i feel like its leaving me i cant finish sentences.slurred speech.forget alot clumsyness.i have back stomach pelvic and knee pains.pain in my jawline and eyes when i move them.i get sick and dizzy often more in the night time after 6. . i also have a shaky feeling in my chest and hands.. and my vison does blurr sometimes i cant read even with my conctacts or glasses on. and my hearing. seems to fade.. my ears always feel clogged. i see the nurologist in a month so im praying i can find a name to what i have. im the one who recommended ms to my doc and weve talked about it, he thinks with my familys history i have a high chance.. does anyone have an ide rayne_769@hotmail.com
—Guest erin

Is It?

Legs take a while to get going in the morning. weakness in arm and hand plus tingling. migraines worse. Going for a pee urgently ...just to trickle. Fatigue is surreal. Dr says anxiety and neck pain responsible. HELP!
—Guest LOST LASS

"mainstream" medicine ignores the cause!

Removing my mercury dental fillings put a halt to my terrifying and severe symptoms of M.S. I still have recurring symptoms, but they are lessening as I continue to detoxify. Mainstream medicine is too busy chasing after individual symptoms to see the inter-relatedness of the whole picture that is obviously multiple sclerosis. The worst thing is that even if they DO decide yoour many symptoms add up to the proper diagnosis of M.S., they DON"T EVEN LOOK FOR A CAUSE!!! Compare symptoms of mercury toxicity and multiple sclerosis--THE SAME! American dentistry and American medicne both refuse to admit scientific facts about mercury (and aluminum, other metals, pesticides and chemicals, and fluoride in foods, water, vaccines, medications, spinal anesthetics, and even our "silver" fillings(50% MERCURY).IT IS A CRIME...and we need to spread the word. Once mercury and other insecticides and chemicals attach to our myelin (as well as other vital organs), our immune system atttacks itself= M.S.
—nurselaurie

symptons

i have had symptons of ms for years but lately they're getting worse. i'm getting blurred vision,my hands shake so bad i can't hold on to anything,i feel a bad shocking sensation in my head everytime i turn my head or eyes,and most of the other symptons. i'm 35 years old and have been feeling this off and on for about 15 years but now it's getting to the point where my legs and arms feel so fatigued i can barely do anything.i go to the doctor and the only thing they do is ask how much pain i'm in give me a shot and send me on my way. do i have to bring this up to a doctor? i just want to know whats wrong with me so i can do something about it. if anybody can offer any advice please email me. thank you
—Guest scott

ms/lyme

I have had ms since 1996. I thought I was having a stroke, because at that time i smoked cigarettes. The right side of my face and body were tingling and going numb. My doc ordered an mri and there it was. I had lesions on the right side of my brain. I have rel/rem ms. I was on a cane at 26 yrs old. I have severe fatigue and have done provigil, symmetril, and ritalin. It is my worse systom ever. there are bladder/bowl issues too. The funny thing is: I was also dx with lyme disease in 2000, and treated for both. It's a long story, but if anyone would like to share this with me, please feel free to email me.
—Guest Debbie

diagnosis

My first major exacerbation began with vertigo and ended with left side paralysis. MRI showed lesions, LP was inconclusive. No diagnosis at that time. Did very well for over 9 years then had another major flare of Trigeminal Neuralgia. More lesions, positive LP, diagnosis. BE VERY AGGRESSIVE in your search for answers. DO NOT TAKE NO for an answer from your doctors or insurance companies. If necessary, go to a teaching hospital or a county hospital (which are usually teaching hospitals). Many have excellent neurologists and some are MS experts. Keep a log of your symptoms, time, date, symptom, severity and duration of them. Take this to your doctor every time you go. Sign in to www.patientslikeme.com as a guest or register as a member of their MS community and search for lizupatree's post on the Super Handy Notebook (or something like that). You can't go wrong with it. Also, ask (or demand) copies of all test results, get MRI CDs, etc. All these will help greatly.
—Guest Mrs.WC

how can I get a dr to listen

It would take to long to explain all my symptoms but with each year getting harder to function normally, sensory issues, balance, pain, life revolving round sleep, trouble walking etc etc....I feel I'm failing as a mum and wife. Drs just dont seem to take the time to listen and obsessed that it is related to a history of depression, when I list symtoms I'm aware everyone seems to suggets Ms how can I make the Dr see this? I'm taking more and more time off work each year, although have a few good periods the attacks seem to be more frequent over time. I just don't know how to get the dr to see I'm not imagining it! So fustrating!
—Guest saz

my first symptoms

last year was the first time i had an attack,but didnt even blink an eye at it. kept working out, jogging, numbness in my foot and hand didnt think much of it. it when for the whole summer. and went away by fall. my brother and sister both have m.s.,i didnt think i could be the 3rd one. on may of this year i was diagonosed with m.s.. i thought i had had a stroke. my speech was slurred numbness in hand and foot really bad. my right eye was droopy. i didnt trust myself to drive or anything. after my spinal , m.r.i. and cat scan they said m.s.. they had seen the lesion on my brain from last year,then the new one which was 3 x bigger. on tuesday of next week i start my shots. i have relapsing m.s.. what are the chances of three siblings havig m.s.. if anybody else has has the same similaritys let me know. the solumedrol i.v.s really stink also. they help but the side effects are terrible. i thought i was going to flip out. fianally got through it,trying to go on with my life. maureen
—maureenkrystyniak

My first round with MS and a response to

My first round of MS (post Bells Palsy) was Optic Neuritis ... my worst hit was the numbness in all my limbs, dizziness, nausea, weakness, cognitive (the worst) ... Seemed to me that doctors knew but were afraid to tell me what was wrong. MS makes it real difficult to keep a "happy" mindset, but, we find reasons to stay "happy" (mine happens to be my son). I am currently in a hit with the numbness, loss of taste (left side of my face is numb/tingly), very weak and just exhausted. Will be visiting neurologist right after the results from my next MRI)... 9 years and counting.
—Guest april

Anita

I had fatigue, visual disturbances, and clumbsiness.
—Guest Anita

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