12 years with no symptoms?

[Sydne]

Hi. I was diagnosed 12 years ago at the age of 30 after having optic neuritis. Almost 10 years before that I had L'hermitte, although at the time I had no idea that that's what it was and I saw an orthopedist. He didn't know what it was either. I also had 3 or so lesions on my MRI.

Over the years, I have not had what I would have called a relapse. I stopped going to my neuro because I felt stupid there. They would tell me to push and pull, poke me with pins, make me walk down the hall, and then say wow you have no disability at all. See you in 4 months! An report of the little things was met with, "MS isn't subtle". I also stopped the copaxone. I was getting like huge dents in my legs and back at the site injection.

But lately I have been exhausted. Last year I had a "bladder infection". Frequency and urgency. My urine tested negative twice for bacteria. And i was SO TIRED. Falling asleep all over the place. I was sure it was cancer.

And now I have this odd sensation sort of under my left shoulder blade, on my back. Tickley feeling. Most days for a couple of weeks.

Over the years, I had like a very occassional little tickle feeling on my face and the tip of my nose, very faint buzzing in my heel when I bend my neck, an occassional really small jerk in my legs. My left hand is weak, like sometimes I can't comfortably grip the steering wheel when I drive, it feels like a massive effort. Sometimes when I walk up stairs I kind of hesitate like I can't figure out how far the next step is.

So are all these little things what MS feels like for some people? Or are they just things that everyone gets? I'm really anxious to know.

[MSer102]

A couple of the things you mentioned could be normal - a very occasional little tickle feeling or an occasional really small jerk in my legs. Everybody gets those. But the other things aren't normal. The excessive sleepiness and weak hand sound more MS like. The exhaustion you are feeling now sounds very much like MS fatigue.

There is something called "benign" MS, but that can only be determined after a number of years have gone by. It's been 22 years since your episode of L'hermitte's so that's enough time to see that your MS has definitely not been the aggressive kind. There are some neurologists who might even say that with so many years behind you your MS has been the benign type.

That doesn't mean that you'll never have a bad relapse or never get worse. But compared to other people with MS who lose their mobility and cognitive function within 10 years your MS has been "friendlier" than theirs and probably "friendlier" than average. Generally, MS isn't subtle. But for some people it actually is.

It's possible that some of the things you've noticed are just aging changes. Lord knows I've noticed that I've slowed down as I've gotten older! But exhaustion is more typical of MS fatigue so it sounds like you are finally experiencing what a lot of MSers get early on.

It might be time for you to get a workup from your primary to see if there's anything going on besides MS. How is your vitamin D level? How's your B12 level? My fatigue got much better when I got my vitamin D level up to above 50 ng/ml.

It might also be time to go back to the neurologist for an update. The neuro can check your walking and your hand weakness and prescribe an anti-fatigue medication for you if you'd like. Your primary can prescribe one too, but the neuro is more likely to be familiar with the ones used for MS. The neuro might want new MRIs to go with the new symptoms. You don't have to do any of that but it will give you a chance to help with the new changes.

[TLC_31]

Exhaustion, “tickley feeling,” buzzing, weakness in the limbs all sound like symptoms of MS. Yes, there are MS mimics, but you have been diagnosed, so those are likely your MS acting up.

I’m sorry you didn’t find Copaxone agreeable, but it was probably working. I hope you’ll consider an interferon or one of the three newer oral disease-modifying drugs. We have so many tools available to fight this disease, and I'm certainly an advocate for going to battle!

[Thinkimjob]

It's probably MS. It can go underground.

I think I had at least ten years after diagnosis before there was really anything worth worrying about - fatigue, yes, occasional numbness, no doubt a flare, but not that bad at all.
Other stuff, but I wouldn't have taken much notice, except I knew I had MS.

I though I had the benign type, but alas, that hasn't turned out to be the case.

That weak hand you've got sounds very MS-y. There's stuff you can take for fatigue, and the "bladder infection symptoms with no actual infection", that's a MS classic. Drugs can help, although mine tends to come and go. I take four Tofranil (anti-bed wetting anti-depressant) every day for three days, and that seems to fix it.

You're only 42, you're still in pretty good shape and there's a lot of good years ahead. I'd try a new dmd, but that's up to you. I take Copaxone, but it probably hasn't made much difference. Then again, it might be doing a great job. Who knows?

If you want the dmds, you'll have to go to a neurologist, and no doubt they'll want to MRI you, but ordinary old doctors can deal with the rest.

Good luck.

[Kimba22]

Sydne,

I also think another MRI and visit to a neurologist are warranted. I'm sorry you felt stupid when you did go to the neuro. Their tests do make us feel silly, but there is a method to their madness. Your neuros actually probably found it refreshing to see a patient like you!

Without MRIs, there's no way to know what's really going on with our MS until the "silence" is broken with new symptoms. It sounds like your MS has decided not to be quite so subtle anymore.

I'd put some thought into going back on a DMD. You're still young and want to keep this disease at bay for as long as possible.

Best wishes,

[KatieAgain]

I got diagnosed in my 30s too. I too had a benign progression at first. I too believe you are experiencing some MS symptoms, but at the same time it seems to be relatively mild.

Reconnecting with a neuro and getting an exam is sage advice. Another MRI would be a good thing.

DMDs. I am a big DMD Advocate in most cases, but it is a very personal decision. With your seemingly low level of progression, DMDs can be worse than the disease itself. I did not initially go on DMDs, I ended up progressing and tried three of the CRAB drugs. I had allergic reactions to two of the drugs and a Severe reaction to Copaxone. I really like Copaxone...it was a shame I had to come off it. So you need to balance the two and decide which is best for you. DMDs or no DMDs.

Good Luck to You.

[Jules A]

I got diagnosed in my 30s too. I too had a benign progression at first. I too believe you are experiencing some MS symptoms, but at the same time it seems to be relatively mild.

Reconnecting with a neuro and getting an exam is sage advice. Another MRI would be a good thing.

DMDs. I am a big DMD Advocate in most cases, but it is a very personal decision. With your seemingly low level of progression, DMDs can be worse than the disease itself. I did not initially go on DMDs, I ended up progressing and tried three of the CRAB drugs. I had allergic reactions to two of the drugs and a Severe reaction to Copaxone. I really like Copaxone...it was a shame I had to come off it. So you need to balance the two and decide which is best for you. DMDs or no DMDs.

Good Luck to You.

Well said. Very simply I always think "MS is only benign or slow progressing until it isn't" and sadly that can change overnight.

[Sydne]

Thank you so much everyone. I am going back to the neurologist. Of course, I can't get an appointment for a month. But I did make one.

I have just had a case of really serious denial. I had optic neuritis once. Otherwise, I was fine. I was not someone who had lots of symptoms for years and was looking for answers. So the diagnosis came as a big unwelcome surprise. And it was so fast. I was diagnosed within a few weeks. I just didn't believe it.

I went off Copaxone originally because I was trying to get pregnant. And then I just never went back to the neuro.

So now I am going to face this head on. I have more symptom questions! I think I'll start a new post!