Submitted by cahennessey on Wed, 2006-10-25 10:52.
I was diagnosed with optic neuritis in 1997 but neither my ophthalmologist nor my internist seemed to take the issue very seriously. Subsequently, I had several terrible headaches that originated in the eye that had been affected with ON -- so bad that I thought I was having a stroke. My face was numb for about a month after two of those episodes. I had several incidents of muscle weakness on my left side following a kind of "electric" zapping on my right side. I reported all of these things to my internist, who didn't even note them in my medical history. Finally, in 2004 I had a major exacerbation: speech so slurry that the problem was thought to be a stroke or a brain tumor. An MRI led to an immediate diagnosis by the emergency room internist, later confirmed by a neurologist. It all seemed like very sloppy medicine to me.
I was reading through the comments on this poll and your mention of severe headache caught my attention. I'm now wondering whether a similar incident way back when I was 21 (I'm 60 now)was the start of the MS. The headache came out of nowhere, lasted a full week, then disappeared just as quickly. Aspirin didn't touch it. As I recall it was focused toward the front of the head - behind my eyes. Was so bad I wanted someone to just put me out of my misery! Nothing remarkable that I can remember happened after that. My right eyelid started drooping a bit and I joked that I tripped over paperclips a lot, but the next memorable occurance was what was diagnosed as "Bell's Palsy" around age 35 and then a loss of vision in one eye for about 2-3 months at age 43 in 1989. Technology being what it was at that time, and awareness of MS being much lower, it's possible these were early indications too. It wasn't until I casually mentioned to my GP at a check-up that my right leg didn't want to "work" one time 2 years prior, that he scheduled an MRI which lead to the definite diagnosis in 1992 at the ripe age of 46. Of course I've gone steadily downhill since then with no exacerbations and no relapses - just slowly downhill.
Hi Had
Loss of feeling on one side of my face
My GP sent me for a CAT scan but was not happy with this so he sent me for a MRI -- bingo legions
I then had a second event about six months later -- tingles up and down my spine which confirmed my diagnoss
regards
I must post as an anonymous reader.The noted MS expert at Vanderbilt University Medical Center would not diagnose my MS or repeat the MRI or the lumbar puncture for 4 years despite repeated relapses.I would be treated by IV steroids and recover so well that he did not think that I was sick.Because my husband suffers from another severe neurological disease diagnosed prior to my becoming ill he decided that I was just depressed and attention seeking.His name is Dr.Subramaniam Sriram and he is a cold hearted bastard.Because of his failure to treat me for MS in a timely fashion I lost my career.My MS despite treatment with Copaxone,methotrexate,Novantrone is essentially refractory to treatment because it got such a strong hold during the years I was his patient,believing I ws being treated by a world clas doctor in a National MS Society funded facility for research.According to my neuro. now my lesions are too numerous to count.I have large areas where they have flowed together causing brain loss.I have lesions through out my brainstem now.The 4 weeks I got off the Copaxone and methotrexate in preparation to begin Tysabri resulted in a big relapse,so I had steroids 10 days ago.I will be private paying for a chemotherapy agent to treat my MS off label because I refuse to be defeated by this .
Submitted by brainfreeze on Wed, 2006-10-25 11:24.
I think I may have voted wrong. My diagnoses came about when I had optic neuritis. It was the clincher that took me down this sometimes rocky road of ms. I was very lucky in that up until a few months ago I was high functioning.
What messes me up is having a definate diagnoses then I saw another neuro who changed it to probable.
I don't understand the importance of this poll.
The time of a definite MS attack is difficult to evaluate in a poll.
You could have an attack after years without physical symptoms but with MRI changes.
This poll only confirm that the diagnosis come when you got a hard relapse.
You got one blind eye or a paralysis and your neurologist say: Oh..You got MS...dah...
Every bit of information is important. It helps to form a more coherent picture. I would use the "puzzle pices" analogy, but that describe very well. It's more like a digital camera--it uses thousands of tiny dots called pixels. And, the more pixels you can cram into a frame, the clearer the picture becomes, and the more details appear that might have been blurred or invisible before. Can't havev one poll that asks,"well, if you answer THIS to THAT, then it means THIS other thing." It doesn't work that way. You need many different polls, and cross reference the information to see if it ALL starts to form a more coherent dialect that can be used to decipher a code. Then that code can be used to apply in many different areas until it starts to make sense in one or more areas. Then, the real work begins in repeating the findings in those areas based on the codes, over and over, until we have a fairly accurate understanding. Funny . . . all this from supposedly small, insignificant questions . . . that eventually add up somehow. Also, if I ever had a symptom like you describe, and the neurologist told me, "oh, you have MS." Neither would I take them seriously without further exploration and explanation, nor is it a moment for me to say,"duh." There are no "duh" moments, except for when your doctor says,"this may hurt."
OK - let me step in and stop this thread. There was apparently a misinterpretation of what was written due to language barriers. The original reply was not an attack on the original poster, but was an attack on bad doctors that could be interpreted incorrectly if you aren't fluent.
None of these polls are rocket science, it's just a means to get an idea of the how's the what's and the why fors. For all we know these aren't symptoms of ms but something else.
I would be curious to know, in retrospect, after receiving a diagnosis, at what age do people think they first expereinced the earliest MS symptom? Yes, it is a given that you can't know for certain - but, personally, there has definitely been a connect the dots feelings to many past medical occurences. I just recently was diagnosed - at 36 - but can go back to a "herniated disc" diagnosis when I was 14 when I would lose feeling and control of my legs that went on for a couple of months. At the time it stumped all the doctors, and they kept scratching their heads over how an athletic and healthy girl of 14 without incidence of trauma could have a herniated disc. Of course, back then MRI's were not prevalent.
The previous writer may have been suggesting a distinction between
"How Long Before You Were Diagnosed Did You Have *Definite* Symptoms of MS?" and
"How old are you, and at what age did you first have Did You Have *Definite* (or possible?) Symptoms of MS?"
I had a lot of eye issues 1 1/2 years before I was diagnosed w/MS. When I did get the diagnosis, I was told to not "connect the dots" from medical issues in the past but I remember times where my right leg just didn't want to work and the time I lost some of my eyesight for a period of time. That was years ago but was memorable and had to have been an MS attack...
A year and a half before I got diagnosed I woke up one morning, got in the shower, and couldn't feel the water on half of my torso.
Being a man, I decided to ignore it rather than go to the doctor. 18 months later the symptoms had built up to the point that I had to admit that I was falling apart and I went to see a doctor. 2 months after that I had a diagnosis.
I can look back 10 more years and see things that could have been the harbingers of MS, but I'm not sure about that.
I was Dx'ed about 6 months ago. At least 5 years ago, I got stomped with the most absurdly destructive depression\anxiety (whatever) possible. Made me completely unable to function; medication helped a lot. It happened to me one day at work outta nowhere - there was no life event that triggered it. About 10 years ago, my right eyelid started to droop a bit. Never thought much of it. About 15 years ago (I'm 27), I had labored breathing that nobody could figure out. All three of these symptoms resurfaced at once (plus a whole bunch of other stuff), 6 months ago. Presto-changeo; MS. Thanks for sharing Art.
I am curious to know how many people that have a MS diagonosis - had a traumatic experience before onset of symptoms. I can track my symptoms back to approximately 6 months after a water skiing accident in 2000 where I almost detached my hamstring.
Blurred vision (and tingling" in fingers) prompted an ophthalmologist to order an MRI in 95 -- no lesions. "Weird stuff" over next few years -- weak ankle, slurred speech, incontinence -- but didn't seek doctor's eval. Gave birth in 98 & soon after had difficulty walking. Saw internist who suggested muscle strengthening exercises -- no improvement in gait. He then suspected I had postpartum depression and prescribed antidepressant therapy with Wellbutrin -- a lot happier BUT I STILL COULDN'T WALK! Others thought I was "looney tunes" but after referral to a neurologist (along with a new positive MRI)I was FINALLY diagnosed with MS in 99.
At the risk of deviating from this poll: Currently on only symptom mgnt drugs because despite aggressive immunosuppressive use still deteriorated to an EDSS >8. Seems like once SPMS you're on your own... (another poll topic?)
Submitted by Anonymous (not verified) on Tue, 2007-03-13 16:45.
I second that suggestion about SPMS and another poll topic. Seems most active research is on relapsing remitting MS which probably is for the best because a permanent remission is a "good thing" and those of us with SPMS aren't likely to experience any remissions. But I agree that it seems we're kind of on our own once SPMS is determined and it's lonely out here.
Submitted by Jen (not verified) on Sun, 2008-04-13 09:25.
My sister also experienced blurred vision, as well as extreme headaches shortly before being diagnosed. Fortunately, our family encouraged her to go to the doctor right away, instead of living with the symptoms.
Symptoms before MS diagnosis
Your Headache symptoms
I was reading through the comments on this poll and your mention of severe headache caught my attention. I'm now wondering whether a similar incident way back when I was 21 (I'm 60 now)was the start of the MS. The headache came out of nowhere, lasted a full week, then disappeared just as quickly. Aspirin didn't touch it. As I recall it was focused toward the front of the head - behind my eyes. Was so bad I wanted someone to just put me out of my misery! Nothing remarkable that I can remember happened after that. My right eyelid started drooping a bit and I joked that I tripped over paperclips a lot, but the next memorable occurance was what was diagnosed as "Bell's Palsy" around age 35 and then a loss of vision in one eye for about 2-3 months at age 43 in 1989. Technology being what it was at that time, and awareness of MS being much lower, it's possible these were early indications too. It wasn't until I casually mentioned to my GP at a check-up that my right leg didn't want to "work" one time 2 years prior, that he scheduled an MRI which lead to the definite diagnosis in 1992 at the ripe age of 46. Of course I've gone steadily downhill since then with no exacerbations and no relapses - just slowly downhill.
my first defined ms thingy
diagnosis
Optic Neuritis
Why this poll?
Re:Why this poll?
This or that
Re:This or that
Re:This or that
Re:Why this poll?
suggested follow-up to this follow-up
Re:suggested follow-up to this follow-up
Re:suggested follow-up to this follow-up
Re:suggested follow-up to this follow-up
New Poll
I just ignored the first symptoms
Re:I just ignored the first symptoms
New Survey Possibility
Re:New Survey Possibility
Re:New Survey Possibility
Getting to my MS diagnosis
Re:Getting to my MS diagnosis
Re:Getting to my MS diagnosis
re: Getting to my MS diagnosis
I second that suggestion about SPMS and another poll topic. Seems most active research is on relapsing remitting MS which probably is for the best because a permanent remission is a "good thing" and those of us with SPMS aren't likely to experience any remissions. But I agree that it seems we're kind of on our own once SPMS is determined and it's lonely out here.
My sister also experienced
My sister also experienced blurred vision, as well as extreme headaches shortly before being diagnosed. Fortunately, our family encouraged her to go to the doctor right away, instead of living with the symptoms.
I didn't know that he has
I didn't know that he has problems with his treatment.
Herniated disc is very dangerous.