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Old 06-03-2008, 10:35 AM   #1
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Another new symptom

Just to recap... I've had Optic Neuritis numerous time and I have not been diagnosed for MS but I'm being monitored.

Yesterday I experience a really distressing thing. The last time I was diagnosed with ON was in early March. It has improved tremendously but I still have blurred vision in my right eye. I live in Alabama and it was a very warm day yesterday. I worked in my yard after work and was feeling fine but all of a sudden I experienced a "wave" of "sparklers" rise from my lower field of vision and move upward. It was like kindof like a reversed waterfall of sparkling lights. I started feeling bad and had to lie down in the grass for a few minutes. Once I cooled off I felt fine and my vision was back to the way it was before working. I have read of others having trouble with the heat. Is this symptom just putting me closer to a diagnosis. I feel great except for these wierd little nagging symptoms. I am starting to dread my Neurologist visit in July. I am afraid my MRIs will show something this time.
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Old 06-03-2008, 11:30 AM   #2
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Re: Another new symptom

Hi there.

I have ahd the exact same thing last december, except that the sparkles came from up and to the left and fell down...weirdly in an erratic movement. It all stopped after a few seconds. My MRI in Feb was negative. I am going for a spinal tap.

J

Quote:
Originally Posted by tangiree View Post
Just to recap... I've had Optic Neuritis numerous time and I have not been diagnosed for MS but I'm being monitored.

Yesterday I experience a really distressing thing. The last time I was diagnosed with ON was in early March. It has improved tremendously but I still have blurred vision in my right eye. I live in Alabama and it was a very warm day yesterday. I worked in my yard after work and was feeling fine but all of a sudden I experienced a "wave" of "sparklers" rise from my lower field of vision and move upward. It was like kindof like a reversed waterfall of sparkling lights. I started feeling bad and had to lie down in the grass for a few minutes. Once I cooled off I felt fine and my vision was back to the way it was before working. I have read of others having trouble with the heat. Is this symptom just putting me closer to a diagnosis. I feel great except for these wierd little nagging symptoms. I am starting to dread my Neurologist visit in July. I am afraid my MRIs will show something this time.

 
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Old 06-03-2008, 08:49 PM   #3
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Re: Another new symptom

It sounds like a scintillating scotoma... I have those often.. I am still waiting on diagnosis. But - look up scintillating scotoma - that might help you there.

Good luck!

 
Old 06-04-2008, 05:32 AM   #4
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Re: Another new symptom

JustLisa,
Have you also had Optic Neuritis as well as the scintillating scotoma you described?

Thanks for all the replys. I was worried due to the information I found online. I copied and pasted it below. If anyone has been diagnosed with having an episode of Uthoff's I would like to hear whether or not their experience was similar or if I am possibly experiencing something different.

UTHOFF'S SYMPTOM:

Uhthoff's Symptom, episodic transient obscuration of vision with exertion, occurs in isolated optic neuritis and in MS. The incidence of the Uhthoff-Symptom in optic neuritis is approximately 50%. Sixteen per cent of patients develop it within 2 weeks of the onset of visual loss and 58% within 2 months. Such patients may experience a long period free of the Symptom, e.g. 3-32 months, followed by the return of episodes without a recurrent attack of optic neuritis. Typically, the visual obscuration is provoked by 5-20 minutes of brisk exercise. Acuity becomes blurred and colors desaturated. After a rest period of 5-60 minutes or up to 24 hours, vision returns to normal. Exertion is not - however - the only provoking factor for Uhthoff-Symptom. Hot baths or showers account for 27.5% of cases and hot weather for another 27.5%.In optic neuritis patients, Uhthoff's symptom is a bad prognostic sign: it correlates significantly with the presence of multifocal white matter lesions on brain MRI and an increased risk of conversion to clinical MS within a mean follow-up of 3.5 years. Uhthoff's Symptom also correlates with a higher incidence of recurrent optic neuritis.

Thanks,
T
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Old 06-06-2008, 08:57 AM   #5
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Re: Another new symptom

Sounds so scary, is in it? I have ON too, just was diagnosed. My eye was blurry and also i had pain behind my eye for about 5 days and it was hard to move it from left to right or up and down. I even did not know what this is, it was not a big deal to me if it wouldn't for my PM Doc who sent me to see eye MD.
What exactly bothers you with your ON symptoms except sensetivity to heat?

I wish you all the best!
Take care.

 
Old 06-06-2008, 09:41 AM   #6
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Re: Another new symptom

Hi, tangiree.

I only first started to notice Uhthoff's after I thought my ON was pretty much gone and the way I experienced it was external temperature changes -- nothing to do with my body heat, only when I would first went outside. About 13 months post ON dx it pretty much completely disappeared. My eye still sometimes feels a weird but it's not frequently at all.

I did have brain lesions at the time of my ON dx, which led me to a very fast MS dx. As far as Uhthoff's being an indicator of future ON episodes, I've never read/heard that. I'm going to have to do some more research on that --- I'm generally not a one source kind of gal!

Do you have follow-up orbital MRIs?

 
Old 06-07-2008, 05:34 PM   #7
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Re: Another new symptom

I am not sure what to think about this issue. Even before ON and my MS diagnosis I would get blurry vision if I ran a high temp or was overly hot from a shower, exercise, or just being in warm temperatures.

I am finally noticing some significant improvement after my second round of ON. But the heat or being tired does make my vision noticably worse.

When I was younger and ran a temp of 102 or higher my vision would go and so would my legs. I would actually have to be carried if I had to get up and walk somewhere.

I just wonder if those were early signs of MS. Seems odd that I might have had MS symptoms that young being that I made it to 44 years old before I was dx'd.

LA



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Originally Posted by Bearygood View Post
Hi, tangiree.

I only first started to notice Uhthoff's after I thought my ON was pretty much gone and the way I experienced it was external temperature changes -- nothing to do with my body heat, only when I would first went outside. About 13 months post ON dx it pretty much completely disappeared. My eye still sometimes feels a weird but it's not frequently at all.

I did have brain lesions at the time of my ON dx, which led me to a very fast MS dx. As far as Uhthoff's being an indicator of future ON episodes, I've never read/heard that. I'm going to have to do some more research on that --- I'm generally not a one source kind of gal!

Do you have follow-up orbital MRIs?
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Optic Neuritis twice this year. Diagnosed with MS 2-13-2008
Started Avonex 2-2008

 
Old 06-08-2008, 07:56 AM   #8
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Re: Another new symptom

I've been extremely sensitive to heat--internal and external, since I was a teenager, and I've never had ON. Looking back, I had MS symptoms as a teenager, but they were so few and far between that it never warranted a doctor visit.

All I know, heat makes me weak, tired, and tingly. So far, it hasn't been a predictor of eye problems, at least for me.
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Old 06-08-2008, 08:09 AM   #9
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Re: Another new symptom

It's interesting to me how long some go on before showing enough symptoms to get a diagnosis while others have enough symptoms very young in life to be diagnosed.

I am very grateful I have lived as long as I have without having too much trouble.

The doctor and I both knew something was going on but just didn't know what it was for some time.

I was always kind of the odd ball when it came to keeping up with other kids.

I over heated easily, could not keep up with the other kids very well, got sick easily.

Maybe none of this has anything to do with MS but in my case it does make me wonder.

MS is so individual. Of course then there is the issue of having had Mono twice. That makes me wonder too.

It is probably one of those things we'll just never really know how or why this all started.

LA


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Originally Posted by april1848 View Post
I've been extremely sensitive to heat--internal and external, since I was a teenager, and I've never had ON. Looking back, I had MS symptoms as a teenager, but they were so few and far between that it never warranted a doctor visit.

All I know, heat makes me weak, tired, and tingly. So far, it hasn't been a predictor of eye problems, at least for me.
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Optic Neuritis twice this year. Diagnosed with MS 2-13-2008
Started Avonex 2-2008

 
Old 06-08-2008, 09:18 AM   #10
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Re: Another new symptom

It interests me too. During high school, I would come home from school completely exhausted, and I'd need a two hour nap before I went to my part-time job. My parents thought I was lazy. I even turned down fun things with my friends on Friday nights because I was just too tired--not normal teenage behavior!! I remember my Dad did take me to the doctor one time to see if there was a reason why I was so tired all the time. She just said I was depressed, which I wasn't, and that was the end of that!

There were also times during high school where limbs, hands or feet would go completely numb, but I always just figured I had slept funny, and I never thought of it beyond that.

I moved out on my own on my 18th birthday into a small, old apartment. It had a very old window air conditioner in it, and it wasn't enough! It also had one of those very old tubs with legs, and it was really deep. I would fill it up with cold water and sit in it for hours. Episodes of numbness, pins and needles, and pain would come and go, but I just ignored them. Later, when I went to medical assisting/billing school, I fell asleep every day in class, sitting up in my chair, pen in hand. I couldn't help it! Thankfully I still managed to get all A's. It happened in college too.

I never had mono or Epstein-Barr, just chickenpox when I was a little kid. Nobody in my family, that I know of, has MS. It makes you wonder, and hindsight is definitely 20/20!
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Old 06-08-2008, 09:48 AM   #11
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Re: Another new symptom

I had chicken pox 2 times, mono (full blown) once for a period of 2 weeks.

That mono really hit me hard. Oddly enough, even though I experienced many bacterial/viral sicknesses early on in life prior to the mono situation, after that, I really didn't get sick as much. Barely at all actually.

I never get a flu shot, and I've had the flu only a couple of times in my 20's.
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Old 06-08-2008, 10:33 AM   #12
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Re: Another new symptom

My niece had chicken pox twice. Once very light when my two girls had it and then a hard case several years later.

She has also had a hard case of Mono once and then a lighter case just recently. She is in her early 20's and I worry about her because she is having some other problems.

My 22 year old daughter had a hard case of Mono also. She was down for about a month and then the rest of her recovery took some time. She also had a hard case of the chicken pox.

Her temp was 104 and she was very sick.
I had to be on steroid treatment when I had Mono, I was that sick. I worry about both girls now that I have been dx'd with MS.

I have an aunt who had Mono bad enough to be in the hospital but she does not have MS. So I guess I should not spend time worrying too much.

I also have a lot of problems with viral type illness but not so much the flu or anything I really need an antibiotic to treat.

I also have psoriasis and I know that is an auto-immune issue. I think that means my immune system is over active.

When I was very young I was on antibiotics constantly. I had to take gamma globulin shots for a couple of years before I started school.

I know we all sit and try to figure out how we ended up here. What did we do wrong or what is it others are doing that we are not doing to stay healthy. It is just crazy.

I have read posts from people who say they were healthy and active up until one day and then they were told they have MS.

I was diagnosed this February and I am still going through times of wondering if the doctor got it right. I can still function. I am not totally disabled although I am not functioning like someone my age without MS.

It's just difficult to accept. What bothers me is the sympathy I get from others. I don't feel like I am "sick" enough to deserve any extra hugs or "how are you doing" questions.

I just really do not want to talk about it outside of these boards and friends I have made who have MS.

LA


Quote:
Originally Posted by Nenu View Post
I had chicken pox 2 times, mono (full blown) once for a period of 2 weeks.

That mono really hit me hard. Oddly enough, even though I experienced many bacterial/viral sicknesses early on in life prior to the mono situation, after that, I really didn't get sick as much. Barely at all actually.

I never get a flu shot, and I've had the flu only a couple of times in my 20's.
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Optic Neuritis twice this year. Diagnosed with MS 2-13-2008
Started Avonex 2-2008

 
Old 06-09-2008, 11:05 AM   #13
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Re: Another new symptom

Thanks for all the replys! Bearygood... if you find more info please share I appreciate all your help.

Tangi
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Old 06-09-2008, 11:55 AM   #14
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Re: Another new symptom

I'll look when I have time, tangiree and will let you know anything I find. For me, what you says did line up because I had brain lesions but as I said, the Uhthoff's wasn't apparent until I was on the mend (at least I don't think so). But, I'm definitely also curious about what you wrote regarding the prognosis as it relates to recurring ON. BTW, I spoke a little too fast, LOL. I did have some "weirdness" when I went out in the heat the other day but it really wasn't bad at all. I definitely have still been seeing improvement over a year in and I'm really thankful that whatever residue is there is minimal.

 
Old 06-16-2008, 12:36 PM   #15
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Re: Another new symptom

Bearygood,

I'm sorry it has taken me so long to respond to your question. Here is the link where I found that information. It may be old and outdated and I have no idea of how valid the info is but here's the link: [url]http://www.jandoerffel.de/on.htm[/url]

Hope you're doing well.

Tangi
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