Benign MS?

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Benign MS?

Postby peaches » Mon Aug 31, 2009 6:04 pm

I saw my neurologist on Friday...as mentioned, I am still in testing and diagnosis stages (due to body twitching).

He had done one MRI of my brain and saw lesions. It is unexplained so he did order another MRI of my lumbar...this showed nothing.

We decided to wait on more tests (he wanted to continue MRI's). Due to being in my mid 50's, he said it woudl be very unusual for me to now just be getting MS, but it's possible.

He said it is 'possible' that I may have 'Benign MS'. I didn't know such a thing existed.

Anyone have benign MS? When did you get diagnosed? What are you experiencing? I've very interested to hear more.
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Postby Meegs » Mon Aug 31, 2009 7:08 pm

hey peaches,

My dad has 'benign' MS... was diagnosed in his 20's... had 10 years of symptoms then poof! It disappeared... he's now 59 and hasn't had any symptoms in over 30 years.

I REALLY hope I'm like him... and that this is just a blip in the radar for me (right now I'm RRMS, dx is December 2004 at the age of 23)

All the best to you!
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Postby Lyon » Mon Aug 31, 2009 7:15 pm

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Postby scorpion » Mon Aug 31, 2009 7:40 pm

wouldn't it be nice if rersearchers could figure out why some people remain benign for years while other progress very rapidly?? ?
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Postby Lyon » Mon Aug 31, 2009 8:01 pm

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Re: Benign MS?

Postby ElMarino » Tue Sep 01, 2009 3:58 am

peaches wrote:Anyone have benign MS? When did you get diagnosed? What are you experiencing? I've very interested to hear more.


I suppose that their wouldn't be many people with benign MS that use this forum, if any.
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Re: Benign MS?

Postby peaches » Tue Sep 01, 2009 7:39 am

ElMarino wrote:
peaches wrote:Anyone have benign MS? When did you get diagnosed? What are you experiencing? I've very interested to hear more.


I suppose that their wouldn't be many people with benign MS that use this forum, if any.


Well, since I am new to this whole thing it would certainly be nice to be able to figure out what is happening.

It appears that symptoms are sooooooooooooooo wide-spread and different with different people, I can understand why it's hard to diagnose.

I went through a period of about a week where I thought my twitching was going away some...at least it settled down, but the last few days it's back quite strong. Laying in bed I can feel the leg twitching and the different parts of my body doing their individual "one-twitch and stop" deal.

I found it interesting reading the post (I'm sorry I can't see your name now) about panic attacks. I have a long history of OCD (obsessive compulsive disorder), eating disorder (anorexia nervosa) and also depression. You have to wonder if this is all wound up together someplace in the brain chemistry/makeup.

Having this part just happen now in my mid 50's is very strange.

There is another board called the "Benign Fasciculation Syndrome" board on www.aboutbfs.com that I'm posting on also, just trying to figure out what I have..... they twitch like I do, but don't have the lesions on the MRI.

I appreciate everyone's different input here....just learning.....
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Re: Benign MS?

Postby ElMarino » Tue Sep 01, 2009 10:58 am

peaches wrote:
ElMarino wrote:
peaches wrote:Anyone have benign MS? When did you get diagnosed? What are you experiencing? I've very interested to hear more.


I suppose that their wouldn't be many people with benign MS that use this forum, if any.


Well, since I am new to this whole thing it would certainly be nice to be able to figure out what is happening.

It appears that symptoms are sooooooooooooooo wide-spread and different with different people, I can understand why it's hard to diagnose.



It's true! For a year or so I thought I had three different minor problems! A small problem with walking which I took to be a trapped nerve, cloudiness of vision which I was told at Moorfield's Eye Hospital was nothing to worry about and I was going for a pee a few times more often every day than usual and I didn't have a clue what that was.. When I realised that they were all one and the same illness I was a little disappointed :(
However, I'd read about so many other illnesses with similar symptoms but much worse prognosis that, by the time I was diagnosed with MS, I was actually quite relieved!
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Re: Benign MS?

Postby peaches » Tue Sep 01, 2009 11:03 am

ElMarino wrote:
peaches wrote:
ElMarino wrote:
peaches wrote:Anyone have benign MS? When did you get diagnosed? What are you experiencing? I've very interested to hear more.


I suppose that their wouldn't be many people with benign MS that use this forum, if any.


Well, since I am new to this whole thing it would certainly be nice to be able to figure out what is happening.

It appears that symptoms are sooooooooooooooo wide-spread and different with different people, I can understand why it's hard to diagnose.



It's true! For a year or so I thought I had three different minor problems! A small problem with walking which I took to be a trapped nerve, cloudiness of vision which I was told at Moorfield's Eye Hospital was nothing to worry about and I was going for a pee a few times more often every day than usual and I didn't have a clue what that was.. When I realised that they were all one and the same illness I was a little disappointed :(
However, I'd read about so many other illnesses with similar symptoms but much worse prognosis that, by the time I was diagnosed with MS, I was actually quite relieved!


Yes, sometimes at least you know WHY somethign is happening.

What do the eye cloudiness have to do with MS? Do you have those lesions on your brain? Is that the correlation?
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Re: Benign MS?

Postby NHE » Tue Sep 01, 2009 12:37 pm

peaches wrote:What do the eye cloudiness have to do with MS? Do you have those lesions on your brain? Is that the correlation?


With MS, it's usually inflammation of the optic nerve and the condition is called opticneuritis. The optic nerve is part of the central nervous system. When I was diagnosed, my opticneuritis clued the doctor in to the fact that the problems I had been having with my leg for the previous month might be due to MS. The doctor looked into my eye and could see the inflamed retina. I then had a couple of MRIs, a spinal tap, various other tests, and a couple of weeks later I had my diagnosis. A round of IV corticosteroids, methylprednisolone, cleared up my vision after several days but it still remained heat sensitive for 6 months to a year afterwards. I also noticed a change in color perception afterwards. For example, colors in the affected eye didn't appear as bright as they did out of my other eye.

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Re: Benign MS?

Postby peaches » Tue Sep 01, 2009 12:41 pm

NHE wrote:
peaches wrote:What do the eye cloudiness have to do with MS? Do you have those lesions on your brain? Is that the correlation?


With MS, it's usually inflammation of the optic nerve and the condition is called opticneuritis. The optic nerve is part of the central nervous system. When I was diagnosed, my opticneuritis clued the doctor in to the fact that the problems I had been having with my leg for the previous month might be due to MS. The doctor looked into my eye and could see the inflamed retina. I then had a couple of MRIs, a spinal tap, various other tests, and a couple of weeks later I had my diagnosis. A round of IV corticosteroids, methylprednisolone, cleared up my vision after several days but it still remained heat sensitive for 6 months to a year afterwards. I also noticed a change in color perception afterwards. For example, colors in the affected eye didn't appear as bright as they did out of my other eye.

NHE


What problems were you having with your leg?

What do you mean your eye was 'heat sensitive'? To what type of heat?
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Re: Benign MS?

Postby NHE » Tue Sep 01, 2009 2:13 pm

peaches wrote:What problems were you having with your leg?


Numbness and burning sensations in my foot. I also had difficulty sleeping on my back as that would make my symptoms worse. Nine years later, I still have this problem. I saw a chiropractor at the time and had x-rays done of my spine. After a month of chiropractic treatment I saw no benefits. My eye then clouded over one day and that's when they discovered the opticneuritis which led to the MS diagnosis.

peaches wrote:What do you mean your eye was 'heat sensitive'? To what type of heat?


High temperatures. For example, one day I decided to go outside and play frisbee when it was 100°F outside and my eye clouded over after about 20 minutes. Coming back inside to an air conditioned building and drinking some cold water brought my body temperature down and restored my vision. I also had to be careful not to take showers that were too hot otherwise my eye would cloud over for about 15-30 minutes afterwards.

My eye is no longer heat sensitive but the heat still just wears me down. It's like someone has pulled out a drain plug and all my energy just flows right out.

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Re: Benign MS?

Postby peaches » Tue Sep 01, 2009 2:25 pm

NHE wrote:
peaches wrote:What problems were you having with your leg?


Numbness and burning sensations in my foot. I also had difficulty sleeping on my back as that would make my symptoms worse. Nine years later, I still have this problem. I saw a chiropractor at the time and had x-rays done of my spine. After a month of chiropractic treatment I saw no benefits. My eye then clouded over one day and that's when they discovered the opticneuritis which led to the MS diagnosis.

peaches wrote:What do you mean your eye was 'heat sensitive'? To what type of heat?


High temperatures. For example, one day I decided to go outside and play frisbee when it was 100°F outside and my eye clouded over after about 20 minutes. Coming back inside to an air conditioned building and drinking some cold water brought my body temperature down and restored my vision. I also had to be careful not to take showers that were too hot otherwise my eye would cloud over for about 15-30 minutes afterwards.

My eye is no longer heat sensitive but the heat still just wears me down. It's like someone has pulled out a drain plug and all my energy just flows right out.

NHE


Interesting.... My feet just burn after a 30 minute walk...do yours?? that maybe 'normal'?
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Re: Benign MS?

Postby JenniferF » Thu Sep 03, 2009 11:14 am

peaches wrote:We decided to wait on more tests (he wanted to continue MRI's). Due to being in my mid 50's, he said it woudl be very unusual for me to now just be getting MS, but it's possible.

He said it is 'possible' that I may have 'Benign MS'. I didn't know such a thing existed.

Anyone have benign MS? When did you get diagnosed? What are you experiencing? I've very interested to hear more.


I'm a not-yet-diagnosed person, not currently pursuing diagnosis. Count me "Possible MS". If it is MS, definitely a benign case so far. I have a disability, but it's a mountaineering disability -- I can only hike so far carrying so heavy of a pack. I had a tremor, but it was only very mild (I could still do what I wanted), and then it went away. Sometimes my hand and foot feel funny, but not so funny it causes any kind of trouble -- just sorta, hmmn, that's different.

At any time it could all just go away. Or something dramatic could happen that pushes me firmly out of the 'benign' camp. Or it could stay exactly like this indefinitely.

I'm guessing your neuro was willing to guess 'benign' for you just because you are old enough that surely if it was going to get dramatic, in his opinion it would have already done so. (I don't know whether he is right or not.) But you really can't tell until it's all over what is or isn't going to happen.

Jen.
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Re: Benign MS?

Postby peaches » Thu Sep 03, 2009 12:12 pm

JenniferF wrote:
peaches wrote:We decided to wait on more tests (he wanted to continue MRI's). Due to being in my mid 50's, he said it woudl be very unusual for me to now just be getting MS, but it's possible.

He said it is 'possible' that I may have 'Benign MS'. I didn't know such a thing existed.

Anyone have benign MS? When did you get diagnosed? What are you experiencing? I've very interested to hear more.


I'm a not-yet-diagnosed person, not currently pursuing diagnosis. Count me "Possible MS". If it is MS, definitely a benign case so far. I have a disability, but it's a mountaineering disability -- I can only hike so far carrying so heavy of a pack. I had a tremor, but it was only very mild (I could still do what I wanted), and then it went away. Sometimes my hand and foot feel funny, but not so funny it causes any kind of trouble -- just sorta, hmmn, that's different.

At any time it could all just go away. Or something dramatic could happen that pushes me firmly out of the 'benign' camp. Or it could stay exactly like this indefinitely.

I'm guessing your neuro was willing to guess 'benign' for you just because you are old enough that surely if it was going to get dramatic, in his opinion it would have already done so. (I don't know whether he is right or not.) But you really can't tell until it's all over what is or isn't going to happen.

Jen.


He really is hesitant to give me an real diagnosis until I get more MRI's or a spinal tap (although he says lots of MS people do not have anything that show up on a spinal)... he's "OK" on waiting..... have you had any MRI's?
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