Question for those who've had MS for a while
 

I always hear people say that they got diagnosed in so and so year but believe they've had it for a long time before their actualy diagnoses, some sayng they believe they had it as far back as 15 years before a diagnoses! Anyways my question is for those who have had that similar kind of experience: I was wondering what your initial symptoms were and if they just went away for years and years until an official diagnoses? Hope my question wasnt confusing :)

My initial symptoms were numbness and visual stuff. I was pregnant with son #2 when I had some double vision and blurriness but I just attributed it to the pregnancy as it went away and stayed away for nearly 20 years.

Both my legs went numb for about a month three years before my diagnosis but again, I considered it was a pinched nerve due to the fact it went away and didn't come back.

The month I was diagnosed I had a barrage of symptoms all converge on me at once. Double vision, numbness, balance issues, L'Hermitte's, ON. It was a terrible several months!

So, my symptoms dated back nearly 20 years before my official diagnosis. So, if I have in fact really had MS as long as that I think I'm doing pretty good at this point. I still have ongoing symptoms every day but I'm still able to be independent and for that I am so grateful. :)

I fall (pardon the pun) in the category of being able to "look back" and believe that I had symptoms long before MS was diagnosed.

1st sx was l'hermittes, I think. After aerobics, if I looked down at my feet, my hands/feet would vibrate mildly.

It was dx'ed as a bulging disc in my neck via xray. I would never even had thought about it until the dx and the MS doctor asked if I had experienced any tingling in arms/feet.

The next misdiagnosed sx was also feet. It felt as if a piece of cardboard had been inserted in the ball of my left foot. Podiatrist wanted to operate on my right foot. That is when I knew the foot doctor was clueless.d:rolleyes:

Nothing ever went away. That is why after a year of a definite diagnosis, I was rediagnosed from RRMS to PPMS and no longer injected any DMD's.

I was diagnosed when I was 24 years old. After learning about the disease I realized I had been having symptoms since I was a kid. What I expereinced as a kid was never looked into as my mother made the decision I was making it all up for attention and seeing a doctor was not necessary :rolleyes:

For me, it's difficult to know at what age it was MS and what would be normal kid stuff. I had chronic UTIs starting at the age of 4 which a cause was never found other than retention, my bladder did not empy completely.

I would slide or drag my feet when I walked. Scuffing up to toes of my shoes was normal because of how I walked (I would get into trouble for ruining my shoes :rolleyes:). It was difficult to pick my feet up correctly.

When I was about 12 years old I started having an odd sensation that I was wet or leaking urine but when I would check I was dry. This would come and go for quite a few years. Several years ago after not experiencing it for many years this symptom once again showed up. My neuro confirmed it was due to MS.

I would be out in the sun for about ten minutes and need to come in and take a nap. I found a cool shower helped. I was about 16 years old.

I was always falling as a kid and it was something I never outgrew. When I was 18 years old I stepped off a curb and went down. There was no warning of any kind, my leg just gave out.

My balance has always sucked. I have a friend whom I have known since we were in middle school and she would always complain I would walk into her. I could not walk in a straight line then and I still can't :rolleyes:

My legs ached much of the time after the age of 14. My mother would tell me it was growing pains and deal with it :rolleyes: Ummm...I had quite "growing" by that age. Actual growing pains that are normal for many children do not go past the age of 12. The aching is the same now as then.

Wow, Snoopy, Don't think I've ever heard your whole story before. Thank you for sharing. :hug:

Mine is much like yours, only my symptoms didn't start until my early 20s (although my Mother remembers me having a few numbness and balance problems in my early teens) and didn't go to the Dr's nor get a DX until my mid 30s, went into a remission, with a few light symptoms and was re DX in my early 50s...long trip.:eek:

I think thay most of us probably had MS symptoms way before it got bad enough for us to go in for a DX. I think there must be a childhood vaccine geared for the future of MS...just like for polio and scarlet fever..etc.:cool:

Hi, IWL. Unlike many of the others who experienced significant symptoms that woulda-coulda-shoulda been a warning sign for a curious physician, my long-ago symptoms were very mild and benign and they only seem relevant in retrospect.

Starting about fifteen years ago (!), my first symptom was a sensation of warm water splashing down the outside of my lower leg from the knee down. As a lifelong dog lover who has always had a pack of dogs around her, I can only tell you that it felt exactly like one of those faithful companions had decided to baptise my lower extremities. Even if I had been inclined to seek medical help for it, there was no way I would have gone to a doctor and explained that an imaginary dog kept peeing on my legs...

I also had numerous episodes of numbness in both hands, (at different times), and up the outer wrist on the left side. As a constant computer user, I attributed this numbness to improper hand positioning during marathon keyboard or trackball mouse usage. I believe that is the same assumption most doctors would have made as well, and I certainly didn't want to go whining about something so "obviously" caused by simply using a PC all day long for work and at night for entertainment.

What's so very clear in hindsight was easy to dismiss at the time. I'm really not sure that it matters that much when it first started since those early indicators were benign and allowed me to continue enjoying my day-to-day life without much concern. It's merely interesting to look back and connect the dots!

I am like Kitty, in that my MS symptoms on a larger (number of symptoms) whacked me upside the head during a period of several months leading up to diagnosis.

My neurologist said that based on his findings (MRI, lumbar puncture results, history of symptoms) believed that I'd had the disease undiagnosed for at least 5 years at the time I was actually diagnosed.

My initial symptoms were attacks of Trigeminal Neuralgia, around 2003-2004... which is in line with his estimation (I was diagnosed March of 2008 ... 4-5 years after those first attacks).

The T.N. attacks came on for a couple months, then disappeared mysteriously. I didn't give it much thought until I hit the 'symptom pool' and got very sick to the point of being unable to work, then getting diagnosed after a lengthy period, then getting into remission to return to work.

Problems began in 1989 with feeling off balance and periods of time with weird numbness. Things would get better off and on and my final diagnosis came in 2002 with similar symptoms coming around again

My story is similar to Snoopy's. Only my Mother believed me and my Dad didn't. But Mom took me to all the doctors and spent a fortune, no medical ins. or MRI's back then in the Fred Flintstones days.:cool:

Even so, Pediatric MS was not even heard of either, until later on. It presents differently. So I fell often (very clumsy) and had numb spots, UTI issues, then a odd tremor. That started the doctors to do more weird tests and in 1981 I was dx'd MS, but had it unknowingly much longer.

BTW, not to confuse too many of you, but CCSVI is considered something you are born with, that gets worse over time. Hmm

Good question! I can trace heat intolerance back to age 7. I was playing outside in the hot summer weather while mom was fixing breakfast. After a half hour or so I came inside feeling very nauseated and lightheaded. I distinctly remember sitting on the floor in the kitchen trying to cool off and feeling like I was going to pass out. As a young teenager I tried to sunbathe. About the most I could tolerate would be an hour then I’d have to come in and take a cool shower and sometimes a nap.

At age 17 I got mono and was slammed with the fatigue bat that never went away, in addition to other symptoms such as numbness down the back of my legs, numbness and tingling in hands and arms, face, etc. I remember the guy I was dating when I was 19 thought I was cheating on him because it seemed like every time he called I was taking a nap. LMAO, I WAS taking a nap!

I had several more issues throughout my 20’s, including chronic UTI’s. I helped a relative move in the dead of summer and they had no A/C. I got really lightheaded and nauseated. When I got back to my apartment I was standing in the kitchen over an A/C vent and passed out. Came to a few minutes later having no clue what just happened, got up and walked into the dining room and passed out again! Just thought it was heatstroke.

Any time my vision would become blurry or it hurt when I moved my eyes, I chalked it up to eye strain not knowing it was actually optic neuritis.

After one helluva exacerbation that attacked my vision – double vision, nystagmus, etc., I was dxd. at age 33 with RRMS.