Question

[Texan123]

I just read a post on another board from a nurse who has MS and works for an MS specialist. She said that her doctor usually goes by the rule that the first 5 years of having MS possibly will tell how the future will look for you.

Can anyone on here say if they believe this comment or not?

Just curious - I have not been dx but, wonder (should I have it) if the past 5 years would be a prediction of my future.

I know this probably sounds crazy from someone who has been told they do not have MS, but I am just curious.

Thanks!

[jena1225]

Doesn't sound crazy to me at all! I was dx'ed with definate MS in 1993. Just in the last year I have started to decline. I was told about 2 years ago that my MS was benign and that since I really have had no true progression in the previous (12 years?) that I should not have any in the next 12 years. I think it was within the next 6 to 8 months (memory not so good :eek: ) That relapsed.

Moral of the story, IN MY OPINION :), is never underestimate what MS can do. It is very unpredictable, and how can anyone know when you immune sytem is going to attack. It's just ridiculous

I sure hope you don't have it, but if you do, you might want to think about one of the "CRABS", even if they tell you it's "benign". I am not telling you that doing a CRAB is a good idea or not, but IF you think it IS, don't let them tell you you don't need it because you are benign. Geez, I really hope that makes sense! lol

(Not everyone chooses a to go the CRAB route)

[agate]

I've heard about this 5-year "rule" several times before. I'm not sure how well it holds up.

For one thing, where do you start counting from when you figure the 5 years? Many people don't know for certain just when their MS began.

Maybe in childhood, maybe when they were in their teens, maybe at age 20. Time and time again you run into people whose doctors have diagnosed MS when they were (for example) 35 but they said they "probably" had had it for 20 years before that--maybe on account of an unexplained episode of paralysis that the person had 20 years earlier.

[Texan123]

I agree Agate! I was thinking about that when I was typing that earlier.

I guess I was just curious as to if the beginning (in general) really kind of gives you an idea of the future.

I developed uveitis in 1994 in my left eye. I was 22 yrs old at the time. I had an MRI in 1996 which was clear. I had NO other problems other than ringing in my years which is why I got the MRI in 1996.

In 2002 I started getting funky burning sensations on my skin. Test after test... year after year for the past 5 years has gotten me NO answers! Nothing! I've been told it's NOT MS! I appreciate that by all means, but for some reason... I still dwell on the thought of it possibly showing up one day.

I've had what "could be" MS symptoms dating back to 1994 with my eye problem. Actually, I've suffered from dizzy spells my entire life, but I have NO positive test results in the MS field. All of my neuro exams and MRIs are very normal.

Should I move away from the possibility of MS?

[lady_express_44]

"A study published in the March 2004 issue of Ophthalmology estimated that more than 280,000 people in the United States are affected by uveitis each year."

"Some of the many different systemic disorders that can cause uveitis include:

acute posterior multifocal placoid pigment epitheliopathy
ankylosing spondylitis
Behçet's disease
birdshot retinochoroidopathy
brucellosis
herpes simplex
herpes zoster
inflammatory bowel disease
juvenile rheumatoid arthritis
Kawasaki's disease
leptospirosis
Lyme disease
multiple sclerosis
presumed ocular histoplasmosis syndrome
psoriatic arthritis
Reiter's syndrome
sarcoidosis
syphilis
systemic lupus erythematosus
toxocariasis
toxoplasmosis
tuberculosis
Vogt-Koyanagi-Harada syndrome"

http://www.allaboutvision.com/conditions/uveitis.htm

"Nearly 36 million Americans suffer from tinnitus" (ringing in the ears), and there are many causes, including:

"a small plug of wax in the ear canal
stiffening of the middle ear bones (otosclerosis)
allergy
high or low blood pressure (blood circulation problems)
a tumor
diabetes
thyroid problems
injury to the head or neck
medications such as anti-inflammatories, antibiotics, sedatives, antidepressants, and aspirin"

http://www.entnet.org/healthinfo/hearing/tinnitus.cfm

Have you been to the doc about the burning recently, and if so, what were you told? Again, there are a lot of causes of skin burning, and generally we would have more then one clear MS symptom going on at a time.

I had my first attack in 1991, and was paralyzed. So, we can seemingly have no illness what-so-ever, get hit with a bad spinal lesion attack, and never recover. I guess we'd be classified as PPMS from the get-go, if that was the case, but in my case, I recovered.

I then went 12 yrs with only residual symptoms, and the odd minor flare. I was initially told that my MS (if it was MS) was benign, and was eventually given a clean bill of health (for insurance purposes) at year 10. On year 12, I had another paralysis attack, improved somewhat, then started to go downhill progressively after that.

So we can be benign, till we are not; then we often move to RRMS. We are RRMS, till we are not; then we can move to SPMS. Or we can be PPMS from the get go.

They say 5 yrs because then they can evaluate if it is very progressive or not. It can change to more progressive any time though, but at least they can decide if it is PPMS by year 5.

If you have a reasonable explanation for your burning symptom, the rest of your history does not necessarily indicate MS. You have also not had a whole lot of symptoms occuring at one time, or seem to have progressed over the last 13 yrs.

Have you had a second opinion from a Neurologist?

In this case, I would be looking to let sleeping dogs (or MonSters) lie for now. I would definitely keep track of my symptoms, dates, etc. and visit your doc if anything new happens, but otherwise just go on with life. That's just me though, and I liked denial.

Cherie

[jena1225]

Geez Cherie, we have an aweful lot of similarities! We had the same onset, I had the same 12 years you had, the "no ms" dx after 12 years, another paralysis attack, etc.. Just wierd. I even liked the denial too!

Texas - I just have to agree with Cherie, she gave some good info and advice :)

[lady_express_44]

Geez Cherie, we have an aweful lot of similarities! We had the same onset, I had the same 12 years you had, the "no ms" dx after 12 years, another paralysis attack, etc.. Just wierd. I even liked the denial too!

There weren't many options back in 1991, so I really didn't see the point in dwelling on the "possibility" of MS. It wasn't easy at first, but all I could do was change my attitude and carry on.

Glad you had some good years (relatively speaking) too, Jena!

Cherie

[MomtoM]

Well, I don't know about that. Although I didn't have problems severe enough to warrant a dr visit till 2002, after I looked back, I remembered different things over the years starting in 1992.

My husband even remembered that I had what I called "bad body days"! And those were when one leg would be numb and I would be dizzy for a few days then be ok.

I don't remember why I didn't even consider going to the dr, maybe because it always went away?

Then in 2002, 1/2 my body went numb and various other fun things and here I am today, sometimes needing a w/c, sometimes crutches, sometimes nothing at all! But the bad times seem to be closer and closer together.
So, I guess it doesn't apply in my case.

Deb

[lady_express_44]

Well, I don't know about that. Although I didn't have problems severe enough to warrant a dr visit till 2002, after I looked back, I remembered different things over the years starting in 1992.

Hi Deb,

It sounds like you may have had MS "signs" earlier, (as I did actually back to the 1970's") but chances are you wouldn't have been tested for it anyway because the symptoms were so vague.

In Texas' case, it looks like MS and/or other like illnesses were considered and tested for already, so now it is just a wait-and-see situation. There's always a possibility that it is MS that she has, and a second opinion is definitely worthwhile, but otherwise I don't see the point in dwelling on it.

But like I said, I liked denial. :D

Cherie

[Texan123]

I have seen 3 different neuros for 3 opinions. In 2002 I saw the first one.... then I moved on to a more specialized neuro in 2003. Then in 2004, I saw an MS specialist (for my own peace of mind). He saw nothing neurological going on and told me to not waste my money on further testing or drs. I went back to him in 2005 with the same symptoms so he ordered an EMG of arms and legs and a 3.0 Tesla MRI. Everything was normal on the MRI and the EMG (though I think the person doing the EMG didn't do it right).

He told me that he sees nothing neurological going on whatsoever. My symptoms have not gotten any worse, nor have I got any new ones through the years. It's always burning sensations, tender to touch and achiness all over (as if I ran a marathon the day before).

So, in a nutshell - I have had 3 opinions from neurologists - as well as I have seen 2 rheumatologists in the past as well. All testing comes back normal.

???????? :eek:

[Matt]

Texan,

Nothing in your history sounds much like MS to me. MS can cause those symptoms, but it is a very unlikely explanation for them. Your tests have also been normal, repeatedly.

There's no need to go into denial, because you have little reason to think that you have MS. Just my very unprofessional opinion which appears to match that of your doctors.

[Moonwolf]

That "rule" didn't work for me. The first years were mostly fatigue and eye problems. Then came some killer exacerbations, relapse, remit, blah, blah. Then just steady downhill, but I'm still much better than during some of those exacerbations.

[Texan123]

What kind of eye problems did you have Moofwolf? ON?