Was MS present long before my diagnosis?
I’m pretty sure I had a MS long before I was diagnosed . I had many strange things happen even as a child. When I was in the fifth grade, I got it rash. The rash was only on my hands and my feet, like gloves and socks. The day my mom took me to the dermatologist, I threw up in the bathroom. The dermatologist said I was having an allergic reaction to the virus. My body was literally allergic to the stomach bug I had, crazy right? The rash cleared up on my hands but the rash on my feet never fully did. I went to numerous dermatologist, tried numerous ointments but nothing helped. To this day the rash is still there. It has spread but neither hurts or itches. It is just red and unsightly.
I had joint pain as a kid with some weaknesses. I was seen by an orthopedist who took X-rays and cat scans. I had pains in my joints and I would be in discomfort a lot especially when sitting. I was blood tested every month for 6 months for Lyme disease. Lyme disease, in case you don’t know, can mimic symptoms of MS. Yes, I had been bitten by a tick twice in my life by that point, I never was again. Didn’t matter I never showed positive for Lyme disease. They said I had juvenile arthritis. As I got older it got better, something juvenile arthritis doesn’t do.
When I was in college on two separate occasions, I remember going down to the health office not feeling well. I was tested for strep throat which would come back negative however my blood tests would show elevated white blood cell counts that I’d be treated for antibiotics.
About a two years before the optic neuritis appeared, I had an abnormal Pap smear. Once again showing elevated white blood cells and abnormal cells. I was no more than 24 years old.
I’m not sure that any of these isolated incidents can be actually attributed to MS but I still find the progression notable. I am willing to bet that the abnormal gene that was attacking my myelin sheath was attacking my body a long time before my actually MS diagnosis. It wouldn’t have made a difference if the diagnosis came earlier, I was 26 when I was diagnosed, that was early enough to change my life. I just think that these incidents were all part of the path that lead to my MS diagnosis in 1998.
13 thoughts on “Was MS present long before my diagnosis?”
I am pretty sure that I had it for about 30 years before I was diagnosed. My first symptom that I felt was unrelated to age was balance. My mid 30s my balance was pathetic. And it went on and on from there. About 15 years I started falling pretty seriously. Went to neurologist and she told me nothing was wrong with me. It is very frustrating! When I was finally diagnosed, it felt good that I wasn’t going crazy!
I’m sure there are a lot of stories like that. I’m hoping others write a response and say their story too.
For me, it was obvious I’ve been dealing with my illness for many years possibly since I was born. It wasn’t until I was 23 that it became an everyday issue and I was diagnosed with my chronic pancreatitis when I was 24. Teachers used to think I’d force myself to vomit to get out of class. It always made me feel so badly, now at least I know for a fact that my symptoms were in fact real and due to a real life disorder vs. me just wanting to skip a test.
That’s terrible. I hate hearing stories like that. People thinking the worst of someone not believing they are actually sick. I had a doctor tell me the optic neuritis was in my head. It wasn’t until the official diagnoses and the comparing of MRI did I even know I had optic neuritis. I believed the doctor. I thought maybe I was under stress.
With me I had sudden eye sight problems and extreme fatigue at about 15. The doctors ran blood tests and in the end decided it was ME. I do now think it probably should have been an S instead of an E! But I agree like you, was diagnosed at 25 and that was early enough. xxx
I agree was probably an S also. Crazy!!! Told my mom about my blog topic, she agrees too too many strange things happened. Had to be MS related somehow.
I have often wondered the same thing. Remembering odd symptoms from long before I was diagnosed.
[ Smiles ] There is a possibility that you had it many years before you were diagnosed with it.
Many Lyme sufferers have tested negative for Lyme disease and have been treated based on symptom picture and background alone. A negative test doesn’t really mean you are disease free and if the tests were done a long time ago the reliability would’ve been very questionable. Ticks carry multiple co-infections that contribute to the overall picture, many of these symptoms match yours. I was bitten in 2007 by a tick and experienced many symptoms you talk about, i never tested positive but after being treated on symptom picture alone i am probably 90% symptom free.
I was bitten as a kid by a tick like maybe 8 years old. My symptoms are actually textbook MS so are my MRI’s. Those joint pains and weaknesses were when I was an adolescent and aren’t anything of what I deal with now, unfortunately. I would have loved it to be as simple as Lyme but it isn’t. I am able to make the comparison of the two diseases because I tried again for that to be a possible diagnosis sometime after the MS diagnosis but it was confirmed MS by three different doctors.
I was diagnosed at 18 and am sure I can track it to at least age 12. I think for most of us it is present long before it is detectable by current methods.
I am sure I had MS long before I was diagnosed. I always felt like a bad case of Mono had something to do with it. I read an article on an MS site yesterday, lo and behold they’re looking for a connection with Mono
I think there is definitely something to that. A lot of people say they had some sort of sickness they felt way before ms