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Readers Respond: Which Symptom Led to Your MS Diagnosis?

Responses: 290


Updated December 04, 2008


I have not been diagnosed. But I have the symptoms. It began about 4 years ago. My parents said I should get the doctor to look at my hips, I was walking funny. I have had MRI's, blood tests, spinal tap, nerve tests in my legs, all negative. My walking has gotten worse. I now use a cane and walk very slow. I can barely lift my feet. I used to be athletic n but now can barely walk. I am still working because the symptoms are only in my legs. from the waist up I am fine and work at a computer. I can walk better if I use a shopping cart at the store. I had surgery on my neck (replaced two discs and screwed a plate to three of the vertebrae. Then had surgery on my lower back and had spurs removed and the canal opened for the spinal cord, hoping this would releive any pressure on the cord. So far, nothing has helped. I have tried drugs (including baclofen) and they didn't help at all. Very frustrating. My wife says don't give up, so I keep plodding along. I walk like a man that's 95.
—Guest Gary W. Barker

livein wth m.s

i have m.s at first i could fool me right leg. then i couldnt frrl my left sida i lost sightin both of my eyes now its back now i lost feeling in my whole boye i get bad back spans all the time it sucks.
—Guest Dawn


I was diagnosed with Ms 1 day after i was married in 1997 at the age of 25. I have several relapses 1 of them my neurologist thought i was not going to come out of the relapse. I have 2 beautiful children & positive thinking keeps me going. I am at the start of another relapse, the worst feeling is pressure in my head, being tired all the time & feeling angry. No feeling in my feet & hands. Not being able to think of anything to conversant about & not wanting any noise at all.Ms is such a debilitating disease & hits so fast & relapses can last for so long. My last relapse lasted for 3 & a half mths. Also not being able to take a deep breath, sharp pains in my head severe joint pain & nerve pain. More needs to be done for people like myself & you who have Ms. The medication for Ms needs to be revised it has more side effects than the Ms it self. I refuse to take any of it. I want my children to see me healthy for the first time in their lives & i want to be able to enjoy my children.

Frustrated and Confused

6 mos ago persistent back pain started. Chiro was baffled why he couldn't fix it & sent me to my Dr. who sent me to Neuro. Had 2 mri's, lumbar puncture, blood test and ultrasound. All neg for an explanation. My symptoms are chronic severe pain in low back/hip area, numbness/cold feeling in hands, weird sensation in left ear, periods of extreme weakness, stiffness, burning sensation by shoulder blades, tingling in 1 or the other arms, a day of head to toe itching, difficulty walking, periodic knee pain, weird shocks the fire thru my body, vibrations and many more. The symptoms have kept me at home for 3 mos and am now finally able to get around a bit better. Heading back to work despite the continued symptoms that affect my activities. I am 38yrs old & had the Epstein-barr virus 11yrs ago. I am extremely active & fit. I have always pushed myself physically and can handle pain/discomfort very well...until now. This has been the most frustrating experience & I just want answers!
—Guest Nikki

Are You Drunk?

In May 2006, I was finishing up the school year as a middle school English teacher. For what seemed like forever in the last four months, I had been stumbling as I walked, falling down the stairs and getting too dizzy to use a ladder when putting up student’s work. I fell often because I would drag a foot and then stumble. My writing on the board was getting harder to read and my forgetfulness made Parent Teacher conferences very hard. Since middle school students say what is on their minds without a concern for niceties or fear of invading someone’s personal space, I got some of these statement/questions! “You walk like someone who has been drinking!” “Why do you fall down the stairs so much!” “Why don’t you pick that right foot up?” “Can’t you walk straight down the hall without stumbling into the walls?” Well, no I couldn’t. My walking and balance were out of control. I was diagnosed that June with relapse/remitting MS. My mother has progressive MS. I am on Copaxone now.

carpel tunnel

A neurologist diagnosed the trouble in my right hand as carpel tunnel so I had the surgery. I still had the right hand symptoms after recuperation, went through MRI & spinal and received my diagnosis of MS. That was six years ago. After I received the carpel tunnel diagnosis I told my husband how relieved I was that it wasn't something worse.
—Guest Pammie

what is wrong with me?

started with ankle/wrist pain, one episode of body pain with loud noises and severe headache, the painful neck twitches, then better for 2yrs, then severe leg pain, foot, migraines, no energy,muscle twitches, severe itching scalp, eye pain, blurred vision in one ear, clicking and swishing sound in one ear, loss of balance....gone from coach, mountain biker, athlete to classroom teacher with severe pain , many MRI's and test, no answers, except hypothyroid and spastic body,..going to same neurologist for 2 years at a well known hospital, should I change doctors, stop taking all medicines, I can not fake these symptoms, I want to shop, garden, bike, walk normal without pain, raise my arms,.....I want to cry but no tears will come out, will I get worse or better? I need help!
—Guest Angie

Possible MS Symptoms - please help!

I have had back pain and spasms for 10 years but only sent for x ray last year. Weird symptoms over last few years - blurred vision recurring headaches \(diagnosed as cluster headaches & migraines) but so bad I go blind or have blind spots. Cramp in legs numbness & pain in legs (diagnosed as sciatica) arm & hand tremors; extreme fatigue for several years, dizziness, confusion foggy brain feeling, excessive sweating (diagnosed as early menopause buy 2 years on periods still regular). More recently extreme pain shooting through body generally from neck through back, collapsed due to legs giving way, constant infections and colds, strange feeling in right ear, pins and needles, thumb goes into spasm, hair loss. Doctor sending me to orthopeadic surgeon where I have been before. So achy and exhausted and forgetful I could cry - which again I don't seem to have any control over my emotions any more. My daughter was rushed to hospital in pain and frightened; I started laughing.
—Guest Sheri

Right sided headache

I got a headache that on the right side of my head that was very different from any I had ever had before, and it just would not go away no matter what I did. I even went to see my Family Doctor after several weeks. Then, when my left arm, hand, etc. started getting numb, he sent me in for an MRI, and the rest is history. It actually took about three years for the final diagnosis. That was about ten years ago. I started on Avonex. Now on Betaseron.
—Guest Mary


It started with double-vision, then I began having "spells" where I felt really drunk at times.
—Guest Bonnie

losing ability to walk

15 years of trying to find out what is wrong with me, with increased immobility. neuro diagnosed right side weakness, numbness, right leg problem walking. back pain, can't stand or walk for more than 4 mins. paralysis of legs when lying down, so sleep in a recliner. severe pain from waist down, hearing loss, mri shows white matter lesions that neuro attributes to diabetes. just had lumbar punch at my insistance, results pending. i really have too many symptoms to list here, but need to find out what is wrong with me, progressive for 15 years, before i lose medical in 9 mo. i am just so tired of the pain.

close to final diagnosis

I simply started with some numbness and tingling one day while working in the garden last spring. it went to a bit of clumsiness holding screws. skip to september, balance and gait issues, still no mri. finally an mri then a 2nd one. my doctor, who has been fantastic, refers me to a neurologist as he feels it's likely ms. this is november last yr. neurologists office calls appt for end of march. not good. my doctor gets angry, sends out referrals with a angry letter advising my condition is worsening. fortunately a neurologist does call and I got to see him before xmas. takes me off work right then after the exam. by then balance is a major problem,spastics, muacle weakness,useless hands. over xmas it gets worse to the point I needed a cane. find out the original mri they missed a small lesion on the brain. they think a tumor on the spine and lucky me just lesions! he orders a lumbar puncture, then 3 days on a iv with methyl prednisdone then pills which I'm getting to the end of.

which symptom lead to your MS diagnosis

I have not yet been diagnosed with MS. But I am having a few of the symptoms. Plus I had a brain scan done less than months ago and part of the diagnosis said there was lesions that were indicative of a dx of MS. But to complicate matters I am being treated for stage 4 breast cancer and I know the taxol I am on causes numbness and tingling in hands and feet which I have big time, have ever worsening co-ordination and trouble focusing at work at times. But this never goes away. My oncologist has given me a chemo holiday for at least 6 weeks to see if the numbness and tingling improve. I am just really concerned because one thing that occurs if I get into a squating position 9 x's out of 10 I have a very hard time getting up, have to get on my knees and grab onto something to pull myself up. Oncologist says no brain tumors so what am I supposed to think and do?


—Guest DIANE

never never ever say quit

had been avoiding doctors for years, was in good condition until I turned 60, workout, skied, biked for thirty years. started not feeling right, my walking was just not normal, had a physical ,bloodwork the whole nine yards of test. everything came back ok. went to orth guy determined I needed hip replacement. still felt something wrong. sawrumeitoligist, poditrist, then finally nueologist, had mri with brain scan, spinal tab and all related test. on a monday dianosed with ms then on thursday had total hip replacement, I had to seperate one from the other. waited two months and started treatment with copaxone. still not walking right but started back exersising, swimming a hour per day then next week adding spinning classes for a month to build up core ster ngh then back to the gym. just wish I could walk a straight line. not feeling sorry for myself, well maybe a little. fight the fight
—Guest robert harvey

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